Any October 2011 Surgeries out there want to wait together?
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Kcobb--- I meant to say to you (sorry again Ann!) that I was sorry you had such a long drive for treatment. Will family be able to stay near you while you are in the hospital?
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Dana -- thanks for the following I forgot to add them to my list and with chemo brain if I dont write it down I dont remember it. I was told I will use my MP3 player to drown out hospital noise.
- lip balm
- lozenges ( for sore throat after surgery)
- mints
- face/body wipes (there were lots to choose from in the cosmetics aisle)Ann--- I might not get all my stuff down on my list, but I will try to get as much as possible done. I too still tire easily post chemo and herceptin is doing a number on my legs - making them tired and sore. Luckily the DH and good friends are helping me this weekend.
another thing everyone wants to consider is larger soft cami's that you can step in and pull up to wear under your shirts after surgery. I got my on sales at Kohl's and Target. Front hook sports bra (fruit of loom) got mine at Walmart.
geez there is so much for us to think about...
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Danadane - I have it too.
I just noticed you are Danadane, not Danadene as I wrote twice. Oops. I had looked back and didn't see whom you meant, but thought I did read of someone's long trip. I gave up. 0 -
To all my BC sisters ...
thank you for all the birthday wishes ...
Kelley - thank you for your insight about "focusing on what is good!"
MargieC, Maria_Malta and Danadane - thank you for for packing list suggestions ... I'm making my list and checking it twice!
Judy67 - thank you for reminding me that I can celebrate next year (when I "truly" have something to celebrate!
Suvivor11 - We're both scheduled for Oct 3rd. Let's hold each other's hand through this and be strong! I'll be thinking about you!
And to all the other October ladies ... you are all in my thoughts and prayers!
I'll let everyone know how my surgery went as soon as I'm able to write!
Love~Joy~Peace,
Trinity
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Hi Ladies,
For all of you preparing for surgery, keep your hospital bag packing to a minimum. I would recommend not bringing your own pj's and robe to the hospital. It is much easier to accommodate an IV with the snap shoulder gowns supplied by the hospital than with your own. Use a second gown with the opening in front to function as a robe for hall walking. Lip balm was a must if you have dry lips but my throat has never bothered me after surgery. I am not a back sleeper so I found that a U shaped neck pillow made back sleeping easier for me. Face wipes were good for freshening up but I didn't use the body wipes until I got home because the nurse's aides gave me daily sponge baths. My hospital worked hard to create a healing environment and there were signs all over asking people to be quiet. It worked! I have never been in such a quiet hospital. The hospital stay goes quickly and most hospitals provide all of your needs so focus more on what you will need as you recover at home. Love and positive thoughts to you all. Caryn0 -
I just got a phone call from my insurance company ... my bilateral mx (and DIEP) have been approved! Hooray! I've been so worried about insurance issues right before my surgery that I had difficulty focusing on getting myself ready for surgery, but I'm good to go ... now I can focus on preparing myself emotionally, physically, and spiritually ... 0
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Forgot to add that if you have SNB or AND, the lymphedema risk is always there, not just post - op. You should always wear gloves when gardening, washing dishes, cleaning etc. Awareness of early signs of lymphedema and taking action to nip it in the bud are critical to trying to keep it at an early stage. I just took a pt/ lymphedema class ( if you have Kaiser and the class is offered, take it. It was very helpful) and it really helped me understand how important pt is educated me about lymphedema. Caryn
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Caryn - very informative info you shared! Thank you!
I've heard so much about lymphedema, but admittedly, I haven't really researched it fully to have a thorough understanding of it ... does it occur frequently?
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Lymphedema is a funny thing. Very little is known in terms of predicting who will or won't get it. If you've had an AND your chances are greater than for those with only SNB. My pt also said research indicates that those who are overweight have a higher chance of developing it. That being said, anyone with node removal is at risk even years after the surgery. Read about LE on the main bco site. I also believe that they referenced an article showing higher rates of truncal LE in SNB patients. My pt taught me lymph drainage massage in addition to the prevention tips. Caryn
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I keep remembering things...I had a surprising amount of mobility in my arms/shoulders from the moment I got out of surgery. It actually shocked me because I was really expecting the T-Rex arms. The side that had AND was less mobile but not bad. I also am faithfully doing my pt exercises. We are all different but some may be surprised by the arm mobility you do have rather than what you don't have. Caryn
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More on lymphadema please - how can you avoid in in the long term? AND - forgive the newbie in me - I know what SNB is but what is AND?
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SNB is sentinel node biopsy, AND is axillary node dissection. You can take steps to try to prevent it but as my pt said, and almost everything you read will confirm, there is no way to predict who will or won't get it. Taking preventative measures is helpful but it's still a crap shoot. Caryn
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Danadane -- yes, some of my family will visit from time to time and my DH plans to stay with me from beginning to end. Hoping we can get him in to Hope Lodge for part of the time so he can sleep in a bed and take a "real" shower! My daughter works full time and goes to school so she will come up and stay the first few days also but says she's not leaving my side so no need to worry about a place for her to stay! LOL
What would we all do without our families!
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Surgery scheduled for Oct 28,2011. BMX with immediate reconstruction.
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Uh oh, a new problem that could threaten my BMX date or at least the TE getting done at the same time. I have a toenail issue! This left great toe has looked a little strange for a while, yellowed a little bit underneath the tip, as if going fungal! All of my fingernails/toenails are discolored from chemo, and I have read that some lose all or some of their nails due to Taxol, even weeks after done. But just this afternoon I noted that this one toe is oozing under the top edge of the nail, and the nail is lifted up a bit. (sorry, gross)
Not knowing whom to call, I decided to start with my PS, since he will be following me longer than my BS, and the TEs present infection issues anyway. Will he even agree to the surgery next week if I have a toenail infection? His nurse spoke to him and lined me up to see a podiatrist on Friday morning, who will then get back to the PS. The podiatrist already told them that he doesn't like to remove a nail on a patient before surgery, and that I may need antibiotics. Anyone else have an issue like this and how did you resolve it or did it cause delays?
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Clams...Thinking of your wife and you. I hope all has gone very well.
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Hello, all!
Anyone else feeling the countdown? I have been keeping upbeat and as positive an attitude as possible. Then, today, on my drive home from work, I wanted to scream NO!!! I DON'T WANT TO!!!PLEASE DON'T MAKE ME!!!
Then I got over it. Funny thing, this mourning loss...quite a roller coaster. I hope you all are managing to move through this well...keeping your sense of humor, remembering the good, and, if you feel like throwing a tantrum, that you are able to take it in stride.I will be thinking of all of you October 3, 4, 5 and 6 women as we move into next week and approach my own surgery (and that of my fellow October 7 women). I hope you are all well.
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AnnAlive, are you sure it's infected? I have (unfortunately) lost several toenails from Taxol. They started as dark/discolored, and then when they started to lift there was some drainage. It was mostly clear yellowish with just a tinge of pink - serosanguinous if you know what that means. My MO wasn't terribly concerned and suggested I soak with Domeboro's solution (found in drugstores) to keep the part underneath from getting too mushy. No need for podiatry for me but I will tell you I was very surprised at how long it took for the nails to actually fall off.. they needed some help actually. I know it's terribly graphic but I wanted to tell you all this because I didn't want you to worry needlessly. The podiatrist will know what to do and of course you should insist on being seen sooner if they are showinng signs of infection (red, hot, pus, etc.). I'll keep my fingers crossed that it doesn't delay you at all!!
p.s. I have a few more that are starting to lift and wouldn't have even thought to mention it to my SO. The skin underneath is intact and there's actually still a thin layer of nail covering much of the nail bed.
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Well, after I received my Oncotype score on Monday morning, my oncologist and surgeon decided to cancel my surgery for October 6th and start chemotherapy this Friday. I'm actually relieved as I was more nervouvs about having surgery than starting chemo. My score came out in the intermediate range and they feel that it was more important to treat me systemically and locally first. Otherwise, I would not be starting chemo for another six weeks possibly! I am fine with their decision. Best of luck to all you October gals. I'm thinking that I won't be having surgery until I am finished with treatment which should be sometime in early February.
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CLC-- yes, I'm definitely feeling The countdown. I really thought I was doing well until yesterday which marked one week to surgery. I've been pretty much a mess since. The BS office called today and I missed the phone and then there was no voicemail. Totally lost it...I did my pre-op tests yesterday and I was sure they were calling to tell me they had to postpone the surgery for some reason. My BS called back about 30 agonizing minutes later and she was just calling to double-check on my decision to do a bmx instead of just mx. Although she did add that because of some cysts in my right breast ( supposedly the non- cancerous side) they might have to do a SNB on that side as well. I guess I can live with that...as long as they do it on the 4th.
It does help knowing I'm not the only one losing it!!!0 -
Danadane...It does help knowing I'm not the only one losing it!!! I agree... Well..here's to a looooong week:)
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I might be out of the loop for the next few days, so I thought I'd jump in and say good luck to everyone getting ready for next week. I loved the to-do and to-bring lists!
I finally spoke with the breast care coordinator at the hospital, who was surprised I haven't had any tests (MRI or CT) scheduled, since I'm brca + and triple negative. Finally, someone who gets it! In the meantime, my PS hasn't gotten back to me to say whether last week's CT scan indicated I am a good DIEP candidate, and my BS hasn't returned a call my Dad made to his office to check up on my schedule last Friday.... I've been feeling so lost and alone. Although I have great friends and family helping me along, it's the doctors that I need to respond.
Sorry to vent. Hopefully by early next week all the loose ends will be resolved and I can look forward to surgery.
Take care all,
Rachel
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Rachel, I really relate to what you're going through. This is a huge weight on us, but to the doctors its just another day at the office. It seems like they are just not getting things together to get that d*** cancer out of you ASAP! I know you're worried about the delay - can you post again when your surgery is scheduled for, or are you still waiting for BS and PS to coordinate?
Is your breast care coordinator an assertive type or is she also just going through the moves? I got one who seemed to want to do the least possible work, so she scheduled one appointment for me and I haven't heard from her in weeks. Although I hate to do this myself, do you feel strong enough to be assertive with the doctors and tell them you are worried and really need to get an answer from them quickly? Sometimes we have to be our own advocate.
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Rachel, I can certainly relate to feeling lost and alone when your doctors aren't responding ... I had insurance issues hanging over my head a week prior to my surgery on the 3rd ... however, fortunately everything was finally resolved today ... you have a couple weeks prior to your surgery, so hopefully you'll get things resolved soon so that you can try to relax and take care of yourself and not have the stress of waiting for doctors to coordinate everything ... you certainly don't need the additional stress at this point ... so, I'm praying all goes well for you! Hang in there, and please know that it's OK to vent ... I've certainly done my fair share of it ... lol ... it helps to express your feelings to women who are there for you no matter what ... it's truly been a safe haven for me ...
btw, I'm a bit confused as to why some women get the neoadjuvant chemo and some don't ... I asked my BS and he felt it wasn't necessary, even though I'm HER2 +++, and my Ki67 results are 60% ... it seems as though I should have had the chemo (and herceptin perhaps) prior to surgery, but I guess I just have to have faith in my doctors' decision .... can anyone shed some light on this topic?
I'm in the midst of a meltdown at the moment, so I apologize for rambling ... I'm just scared out of my mind ... four days and counting ... and, it's seeming all too real to me now ...
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Clams-hoping your wife did well, send her our love.
Judy67-a positive attitude is all we have sometimes. I know thats how I've gotten through this even though it does irritate me sometimes when people don't follow my que and go with it. Some people are just going to be downer no matter whether it's about traffic or cancer. Keep your chin up.
Trinity-yeah that the insurance company actually is going to do their job. Will be holding your hand to. Finish pre-ops over the next two days then going to try to have a great weekend before Monday morning gets here. Right beside ya sister.
exbrnxgrl-I've been a luck one so far and have had no signs of LE and I too was a lucky one who has no mobility issues in my arms, had 3 nodes out of Lt and 1 in Rt. Hoping my luck holds out, I really pushed it as far as movement after surgery, but don't advocate this. I know my PS and BS were all over me for that, bad patient I suppose. Hey I have 3 kids and a life.
Sending everyone warm hugs and thoughts this evening.
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Rachel,
rk85 actually gave you really good advice ... I had to be my own advocate at times ... so, perhaps you should take her advice and just tell your doctors how you're feeling and be persistent! ... I had to make numerous phone calls during the pre-surgery phase, even though it was emotionally draining at times ... however, things did finally work out ... hoping and praying things go well for you ...
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All went well today according to the doctors. Mrs Clams was in the OR for 8.5 hours (!) but all things considered, she looks amazing. Loopy, sleepy and sore, but mostly aware of what's going on. Pain doesn't seem too bad (thank you Sister Morphine). According to the wonderful nurse, tomorrow the big move will be to stand her up and move her to the chair, and maybe get her back on solid foods by dinner. And for me right now? A big friggin jack and diet coke.
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kks_rd - Wow, thanks for your input on toenails. No, it may not be infected. There is some thick yellowish drainage, and not a lot of it, even after several hours from when I first noticed it. (Lovely conversation topic.) No heat or redness. I have cleaned it with some hydrogen peroxide twice, and put on some Neosporin for overnight. I'll get some Domeboro's solution tomorrow morning and soak ALL my toes a few times before the Friday podiatrist appt. Now that I took off the nail polish, I see a few others that are suspicious -- evidently I have Taxol Toenails! My fingernails are not doing that -- they are partly brown from A/C chemo.
Rachel - I identify with not getting a response from the docs sometimes. I never got a satisfactory answer on why none of them want an echocardiogram before surgery (had only one, before chemo, and have had 14 weeks of Herceptin). I haven't heard if I am supposed to have any lab work before surgery. I hope all of your answers flow in quickly!
Danadane and CLC - It looks like we're all getting nervous as the surgery date approaches, and also worried that the date might slide for whatever reason. Hey, I don't want to lose my date or TEs over an ugly toenail!
Clams - So good to hear things went well in the OR; praying for progress tomorrow!
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I don't want to sound the alarm but lymphedema can develop at anytime after you've had nodes removed, even years later. So just because you haven't developed it now doesn't mean you're out of the woods. Taking precautions and being fully aware of it's symptoms becomes a lifelong job. This was really emphasized in the class I took. I have also been reminded of it every time I have had my blood pressure taken since surgery and when I got a flu shot yesterday. Had to say, "right arm only!"For those who've had nodes taken from both sides, I'm told the leg is used for bp.
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Trinity927 - I've been wondering about chemo before surgery too. My surgeon scheduled my surgery first and I haven't been to the oncologist yet. My understanding was to remove the cancer first and send it all off to pathology before taking the next step. I'm triple positive with Ki53 so I've been anxious to get this surgery done and get the cancer out of there ASAP.
Clams - I'm so glad your wife is doing well. What a relief it must be to have that part over with at least. Hope she heals quickly and everything else goes smoothly.
Thanks for all the packing suggestions. I must be partially in denial because I haven't even started packing yet. I did order several pajama/lounge pants to wear while I'm recuperating. My DH wants to get a small recliner for our bedroom besides the one we already have downstairs. I'm not sure it's necessary. Are most women able to sleep in their own beds propped up on pillows? That was my plan.
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