Lumpectomy Lounge....let's talk!

LovestoFly, just read your blog post. That wig looks phenomenal on you, so keep on wearing it. Some people just don't know when to keep their thoughts to themselves. Who the heck asks someone else why she's scratching her head? Geez Louise, it's not as if you might have head lice and you're standing too close.

Get back home from NH and going thorough the mail... Of course the Sports Illustrated Swimsuit Ed has to come. And as I'm opening my new beanies n sleeping head covers that I ordered because IM GOING TO BE BALD IN LESS THAN 10 DAYS, I ask him very sarcastically if he wants the magazine. He doesn't answer and puts his head down. Really?!! I'm at the lowest point in my life, worst shape of my life, had the worst time with chemo because.. I HAVE CANCER... Chunks taken out of my breasts and he can't just say... "No honey, you can toss it."

So the magazine conveniently found its way to hit the back side of his head quite hard...

Ouch, MLP. I'm convinced that most husbands really do want to do the right thing, but sometimes the boy inside them is an idiot. Hopefully, yours got the message.

I have a question for those who use essential oils. My sister totally believes in these things, so she gave me some Panaway for my very painful arthritic knees. She gave my DD some lemongrass & grape seed oil for her leg cramps. I had another of those terrible episodes last night--top of my thigh had pins & needles and then suddenly it felt like someone had laid a large, red hot knife on my thigh. It only lasts about 30 seconds, but I swear, it's like being branded. After these episodes the top of my thigh is very sore, like it would be if you caught it on the edge of a piece of furniture. That deep kind of soreness. I'm taking diclofenac (Voltaran) for the knee pain, so it's tolerable, and it's helping with the breast pain but not so much the thigh pain.

Anyway, I located the essential oils and decided to try the lemongrass/grape seed oil on the thigh. So far, there's no difference. Maybe I should use the Panaway.

Praline- I have the Fitbit One, it came with a clip and instructions on where to wear it for best results. Like Sandy reported there are issues with flights climbed. It seems that it's a known issue, but the company has no idea how to fix it. All Fitbits "roll over" at midnight, and I admit, I've had difficulty trying to link the thing with my laptop, but it linked nicely with my phone. I'm not sure if it just doesn't like to link to two different devices or if it doesn't like my old Mac laptop, but either way I access my phone far more.

Rosierosie- Welcome to the group, and I hope you are feeling less worried about your surgery. It's hard to not worry about the unknown, but the hospital staff really are (for the most part) very concerned with our comfort, just be sure to let them know about your fears/concerns so they can do right by you. Also, if you get nervous, have your questions written down, and if you get too nervous, just hand the paper over. Keep extra paper on hand for those answers though, because you get lots of information in a short time. You can also ask if there's a nurse you can contact if you end up with more questions.

MLP- I am so sorry that this whole chemo thing is being so rough with you. Hang in there. My understanding is to not use spray tan at all during chemo, but I've read so much stuff in so many places that I'm not sure that I can figure out the why for you. Do you remember what article you read on Essential oils? I tried a search and there were over 200 articles included. Oh, and good shot with that magazine. I don't know that I would give him the option. You should tell him that it bothers you and why (just like you told us).

Froggie- You might try elevating that heavy arm several times a day, and you can open and close the hand while doing so, too. Make sure you talk to your doc about that heavy feeling as that can be a symptom of LE. I know it's a scary thought, but better to deal with it earlier than later. Prayers that it is just normal post op swelling.

Poodles- I hope that your initial debridement is helping and that they won't need to go in to do further debridement. Prayers for a simple answer to your misbehaving nerves. And YAY for having interesting CE and San Diego to look forward to.

Brightsocks- I'm so sorry the radiation is so tough on you. Hang in there and remember we are all with you and in your pocket!

Jan- glad to hear things are going so well.

Sloan- I sure wish I could get up there to see you. One of the problems with Texas being so big. I do love that hair, it looks so great on you!

LTFly- Maybe a slower wean would help? Like going from one pill to half, then off. I know that it sucks taking extra pills (especially steroids), but it might be worth asking about and trying. I love the wig and the hat! That woman was so rude and I hope that your response through her for a loop. Maybe it will make her more sensitive in her approach to strangers in the future. I wonder if they make anything that you can put on under the wig that would make it less scratchy. Surely lots of chemo patients have the same problem with our skin becoming so much more sensitive.

Blamoms- Prayers for a good day, and the end to your nausea, you got this!

Sandy (and any other LE folks out there)- I found this article regarding how to perform MLD, does this seem to follow what you know/do? My LE therapist didn't really get into treatment with me, but I want to be fully armed against this enemy.

http://www.cbcn.ca/documents/ywc_presentations/(4C)%20Managing%20Lymphedema%20Notes4%20-%20Anna%20Kennedy.pdf

Whew, caught up to everything here. I love all the love and support here and so grateful for all of you. Now I'm on to getting some steps in this weekend, I might even try to jog (just a little).

Poodles- I don't know much about essential oils, but I do know that pain relievers for soft tissue pain don't tend to do much for neurologic pain. I'm so sorry, this sounds like a rough battle. I hope you get relief soon.

I wouldn’t have even asked if he wanted the magazine, just let it sit there. (In fact, that’s what I did. Bob hasn’t read it yet). I know I will never have a body like those models (in fact, I never did) and Bob knows that too. I’m just not a fan of confrontation or of giving anybody a chance to even think about whether they’re insensitive. Life’s just too short. I almost lost Bob this May when first the GI endoscopist punctured his bowel and then some idiot second-year resident mismanaged him into fluid overload and to the brink of heart failure. We celebrated our 44th anniversary with plastic flutes of seltzer in his hospital room (and our 41st and 42nd the same way, in my orthopedic rehab room while recovering from my knee replacements). I want to be able to toast our 45th this June with champagne and friends in a good restaurant.

That article is almost exactly how I was taught to do MLD, except that I don’t massage the sides or back of my neck, and I was instructed to do all four quadrants of my breast as well. The proper degree of pressure was described to me by the therapist as “imagine you’re petting a skittish cat that could turn on you at any moment.” Having had several cats just like that, I knew exactly what she meant! The friction when stroking across my chest towards the opposite armpit is a bit of a challenge, though. Even after showering and using moisturizer, I sometimes feel little pill balls of dead skin (despite having exfoliated).

1step - yes, that is similar to what I do. There are some good YouTube videos so you get a sense of how softly to brush the arm lymph up. Also, the deep breaths are important to free up space for the lymph to go. My LT said to lie on your back, put your hand a couple inches above your belly button, and inflate to touch your hand.

Hopefully Marie and I can meet at a Starbucks before I fly out! Yay!

Aw...MLP- DH just did not get it...sometimes, they just cannot. My DH is a brother to 3 sisters....is a girls' guy- like the best friend to HS gals because he understood how and what gals thought because he lived with so many at home...and, loved so many as he grew up haha. Point is- even HE has told me how inadequate he has felt on this journey....we have been dating or married since we were both 23 (he's 2 days older than I)...celebrating our 30th wedding anniversary in June. Sometimes they just do not know what to say or do. I've thought about this before when sisterfriends have posted things....and, I have to think about what to say....sometimes the things I post to y'all sounds so dumb later. I guess the message I'm trying to send is- we are all doing the best we can..he is struggling too. I don't know- sorry for rambling....you just really made me think about stupid BC and the affect on all involved for each one of us and the collective "ALL".

I am still not finished reading all of the posts but I want to answer Froggie:  please have doctors use your legs for blood pressure cuffs, for IV's, and for blood draws.  Do not chance using either arm, ever.  You had sentinal lymph node surgery to both arms.  Once you have this surgery, you may develop LE, even years later.  It is not worth risking Le.  Many medical staff are not aware of the seriousness of lymphedema.  Many  do not even know anything about LE.  You must tell all medical personnel that you will not let them use either of your arms and that they must use your legs.  You do not want to ever develop LE.  Good luck and I hope that you feel better soon.

Welcome to all of the newcomers and good luck.  You just joined an amazing group.

Sorry poodles.  I hope you feel better quickly. I don't know how else to respond other than that I am sending you positive thoughts and prayers.

Dear Sloan:  My MO does blood tests every time that I see her.  It is a relief to me that she does so.  I wish you the best with your elevated levels.  Most of the time an elevated level does not mean anything.  The MO will retest for accuracy.  Good luck and try not to stress (easier said than done).

Dear Rosie: You may not have to have a SLNB with DCIS.  Ask your doctor. I am hoping that your stress levels diminish.  It is very scary so I am saying prayers for an easy time with your tx plan and recovery.  Good luck. 

Dear Robinda:

I had a double lumpectomy.  All in all, they removed 12cm of tissue between both lumps and they got all of the tissue in one surgery. They had to go back and remove more tissue from one of my lumps but they knew that during surgery.  I did not have to have a second surgery.  My plastic surgeon was fantastic and so was my breast surgeon.  My PS did a breast reduction and a breast lift.  This was medically necessary or else my  breasts would have been different sizes and my nipples would not have been symmetrical.  My PS factored in that I would be having radiation after my double lx surgery.  After completing tx, my breasts look amazing.  Ask your doctor questions.  I am sure that they will be able to let you know whether they think that they can get the margins in one surgery.  Good luck.

Does anyone know if there may be breast tissue above the sternum, between both breasts?  I am noticing a swelling between my breasts that is visible.  Both my cousin and my boyfriend can see that my skin is slightly raised.  However, this area does not feel like a lump at all.  I think that I am just needlessly worrying.  It is hard for me not to worry because I feel lumps everywhere.  I have extremely dense, lumpy, "busy"  breasts.  My RO at M.D. Anderson Medical Center informed me that my breasts are among the most dense that he has ever encountered. Yay for me, not.

FYI:  I went to a fabulous retreat for breast cancer survivors hosted by the Lotus Survival Foundation.  They are a selfless group of breast cancer survivors who help other breast cancer survivors by hosting free retreats that are absolutely terrific.  They host retreats in Delray Beach, Florida in the Spring and retreats in North Carolina in September/October.  I do not know which part of NC.  However, I do know that many of you live in or near NC.  The website is lotussurvivalfoundation.org (or com) for more information.  If any of you can go on one of these retreats, please do so.  I went last year and again, this year.  My cousin from Maryland went on the retreat last weekend with me.  (My other cousin from NY is undergoing rads now and is having a very difficult time with rads so she could not go.) Please visit the Lotus Survival Foundation website and if anyone can donate, please do so because they really provide a wonderful service to breast cancer survivors.

On a positive note, one of my former students sent me flowers on Thursday.  She thanked me for all that I have done for her.  I love working with my students.  I work in one of the poorest areas in the United States.  It is really rewarding to work with these high school students.  They are an inspiration to me. (I am a High School Counselor.  I have also worked with Autistic and Trainable Mentally Handicapped elementary age students, and ESE middle school students.)

Hugs again to everyone here.  I am glad that I am part of this "family" of fabulous women. 

Froggie - I feel for you, I was diagnosed with Fibromyalgia over 10 years ago, I was bedridden had to give up work and learn to walk again. I ended up just working on myself for a few years. Came good went back to work, I think Ive gotten used to being in pain all the time that Ive forgotten all about it. Until Chemo....apparently it worsens this condition, little did I know and as I havent thought about it in years, but the Staff said this is partly why I suffered with so much pain.

MLP - Aww Im sorry about DH, men can be so insensitive and honestly you have every right to feel upset. Youre on a roller coaster all of it is so so hard. Love those buzz cuts!!! I buzzed mine too as had hair like yours and it was too upsetting. I think as you arent feeling great either with Chemo, I was unwell about 8 days then came good, you'll pick up!! but the Gastric disturbances are normal too, these are all the things you let the staff know and its a tweaking process to get meds right. Hang in there, my hair is really starting to grow now, I have eyelashes and they are beautiful again, who would have thought...the simplest things are so amazing its like a prize strangely after what you go through. So hang in there, and dont apologize for anything you feel...because youve earnt it!! Hang in there!

LTF - You just keep rocking those wigs!!! just remember part of this journey is digging deep and inspite of all these challenges, love yourself just that little bit more. Theres alot of ignorance out there, stand tall and proud, you are beautiful..

Sloan loving the hair!!!! yay!!! Hi everyone else, sorry so much Ive missed but am soooo tired from work.

Hugs everyone x

Found this article on Memorial Sloane Kettering Cancer site. It describes the adverse effects of herbs during treatment. It's pretty straight forward. I also found out that Tumeric can inhibit chemo as well cause problems with bleeding and platelet counts during treatments, including rads.

https://www.mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine/herbs/herbs-botanicals-other-products-faqs

mlp I'm starting to feel like I should just eat plain oatmeal!!!

MLP3, here's your link done so it is active: MLP3s Link Hint: Just use the "paperclip" hyperlink icon (4th from the right) to make them active - we're all too used to having a cut and paste link just work, but not here).

HUGS!