Calling all TNs
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If one more person tells me that breast cancer is curable and quit "fretting" I will scream. I have had so many people tell me that they have a sister, relative or whatever that are absolutely fine after having BC. It is almost not worth my breath to explain to them that there are different types of BC.
Ohhh! Thanks to my lucky stars to have you guys to talk to. Life is great.
I had a great evening tonight. Friends stopped by and said hello with their fabulous Halloween costumes. This time has really given me the opportunity to see who my "real" friends are. It has been wonderful.I didn't feel like going to parties with my drains still in. But great seeing friends. When can I wear a bra? Did any of you get the fake silicone breasts in TLC.org until recon was started? I know it sounds silly, that now I have a life of "at least a year or more" but I really miss my breast and would like to feel more presentable. I've always been a girlie girl. I am supposed to go to Baltimore next week and New york after and I would like to feel a little more normal. Plus my surgeon gave me some restrictions on my arm as far as preventing lymphoma, I guess that is what it's called. Do you all recommend any advise as far as deterring it? He said to stay out of the sun, no spider or mosquito bits and no cuts or nicks. What if I accidentally roll over on my arm to sleep? Any and all advise will be greatly appreciated. Thanks all. Hope you had a great week-end.
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LauraJane:
Have you checked about flying this soon? Will you need a sleeve or anything. I only had a lumpectomy, so I'm not all that familiar with the precautions you should take, but I have read from time to time about the flying too soon situation. Just thought I'd mention it for what it's worth, wouldn't want to see you have any problems.
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I think you mean lymphedema. It's caused by impaired lymph drainage due to lymph nodes being removed. I think the basic restrictions are no blood pressures or needle sticks in that arm, if at all possible.
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Nothing like a massage!
Remember the 25 year old I was telling you about...well..she is Stage 3..and that is good because it hasn't metastized...but...someone told me that she would be "cured"...I kinda got a little prickly and said that she was "treatable"...I took a little heat from saying that...Oh..man..I sure wish I could say that I was cured! But I can't..I just say I'm "cancer free" for now..and I hope it stays that way.
My SIL had BC also..imagine my shock..when after my lumpectomy we stopped at her house on the way home...(the drugs had me WIRED)...and I said..well..the tumor is "OUT"..I'm good to go"..and she quickly burst my bubble..and she told me about cancer cells getting out of my breast and going elsewhere...talk about a downer...I guess I needed to know that (wasn't on here yet)...that was my ignorance of cancer...
The best thing today? Having my DS home from college and getting to hug him..alot!.. Soon he and my DD will be home for Thanksgiving vacation and then Christmas...my DD is getting married next October..busy time for us...
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LRM - I'll be able to confirm flying with my surgeon on Thursday. I'll try and right down all of my questions first like sleeve etc. Thanks.
Riley- That is pretty much all I was told also. Thank-you
Titan- I agree there is nothing like a good massage. I'd like to add that to "The best thing that happened to me today list" real soon. Is DD darling dad? Getting married? That is too cool. Love it. I'm glad you got to spend some time with your son. I am so looking forward to the holidays this year too.
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cc4npg: Whippetmom, Estepp, Lilah, Myself & Firni are all helping Fumi out! Fumi still has the final word for full access.
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LRM: Wow, no one ever said anything to me about flying too soo!
Laurajane: I really still have to remind myself to not lift anything with my left arm. My job requires me to lug heavy stuff all of the time so it takes some getting used to! I sent you a PM re: the picture site.
Happy Halloween Everyone!
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LJ: I almost forgot! I went to JC Penneys on line and bought the silicone inserts and some foam ones that had velcro that stuck to my clothes. Both came in handy while I was going through the expansion process and will work great for now. If you don't mind slightly used (I only wore these a few times), I could send you the silicone ones (the others I threw out). They are a B/C in size, but very inexpensive to buy. Must sleep now!
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Laurajane - Do you have a mastectomy bra shop near you? That's where I got my first bras with the slot for the prosthetic to make me look like I had boobs. They sell so much there to make your life easier. As for flying - I flew soon after surgery and was advised to get a sleeve which was fitted at the mastectomy shop. This was all covered by insurance. Also has your BS or PS said anything about seeing a PT. I started 2 weeks after my mastectomy and it made a world of difference in my movement. She also alleviated my fears about lumps and bumps. Most were scar tissue she broke up or clogged ducts.
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Happy Halloween (courtesy of Gary Larson):
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LJ - I have prosthesis because I haven't done recon yet. Talk to your surgeon about wearing them. Mine wanted me to wait a full 90 days to let my scars completely heal without anything rubbing against them. Enjoy your trip!!!
hheidi - you are so funny....
Yesterday I went to my cousin's house for a family Halloween party, they recently moved to a rural area so they had haystacks for the kids to dig in and find stuff, a pumpkin patch and hayrides. Lots of fun for the little ones and I got to hang out with my godchild (who is 18 mon).
Hope everyone has a great day and their football teams do well, unless you're a Steeler's fan (for today).
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Linda and MicheleS... all I can say is, WORD.
I am so thankful we have this place to go; to ask goofy questions, to make dumb jokes, to support newly diagnosed and return the support we got when we were first diagnosed, to complain, to moan and groan, to be silly. Our friends and family should also be thankful too.
Meet with my SuperOnc on monday, to discuss the new normal and schedule for follow up. Besides thinking out the box with my treatment, which totally ROCKED - he's a hugger. I want to adopt him. j/k Another milestone. woot woot
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Linda and MicheleS... all I can say is, WORD.I am so thankful we have this place to go; to ask goofy questions, to make dumb jokes, to support newly diagnosed and return the support we got when we were first diagnosed, to complain, to moan and groan, to be silly. Our friends and family should also be thankful too. Meet with my SuperOnc on monday, to discuss the new normal and schedule for follow up. My onc, besides thinking out the box with my treatment, which totally ROCKED - he's a hugger. I want to adopt him. j/k Another milestone. woot woot0
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Laurajane: Happy Halloween! Will you have trick or treaters? My daughter said that with my tubes (drains) and lack of hair, I could go to a halloween party and look scary without needing a costume. Pretty convenient, haha.
My BS also is sending me to a PT to deal with the lymphedema stuff. I have heard you can get a prosthesis; I am not sure if there is a shop in my town. If you don't have one near you, there is probably one in Baltimore or New York. How fun you get to travel. I have also heard that Nordstrom will help you get fitted with special bras, etc. We have a lot to learn, don't we? So your surgeon said no spider or mos. bites on that arm? I guess they will just have to bite the other arm. But how are we supposed to avoid the sun?
Hheidi: Thank you, I love Gary Larson
Swiftbird: Your post about getting new glasses made me smile. I got mine at Costco a couple of weeks ago. The same thing happened to me. After they fitted the glasses on me, I steered my basket across the store and started feeling disoriented. I immediately panicked and thought I was having a seizure or something. Then I realized it was the glasses and I was so relieved. Yes, I guess that is the new normal for us.
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Happy Halloween!!!!!
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Lynne: I have been kind of rushed the last few days. How are you healing up? Too bad it was March when I had my bald head and drains. I ended up dressing up as a Pirate's Wench and showed off my new foobs.
MonkaV: Happy Halloween to you, too!
Laurajane: Good advice to ask your dr. when you can wear a bra and prosthetics. The foam insert from JC Penny is great because you don't need a bra and it sticks to your clothes. It worked great while I couldn't wear a bra and I was in the middle of reconstruction.
hhfheidi: Love your post!!
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Swiftbird & Lynne: I had to get bifocal contact lenses recently. I guess chemo changed my eyes and made them worse. Hope it doesn't progress. I can't wear glasses--makes me dizzy.
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BETTE MIDLER CALLS IT "CORRECTLY!"
'I haven't left my house in days. I watch the newschannels incessantly.
All the news stories are about the election; all the commercials are Viagra and Cialis.
Election, erection, election, erection
Either way we're screwed!' -- Bette Midler.
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HeidiToo: You changed your name? and your location I see!
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Yeah... figured it's easier to remember than all those letters in front. Change is good!
No, I've always been from Earth... it's the Aliens that live somewhere else.
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I am here as well.
Saturday, October 30, 2010
Pink Pee and telling the kids you have Cancer After each chemo injection of AC you pee pink for a little while, and I was disappointed it didn't last all week, just a day. I thought it was kind of humorous, with all the pink surrounding us. You see I announced my cancer to family and friends in October and October is the official Breast Cancer Awareness Month.
On October 1st, Mike and I had the daunting task of telling our 13 year-old-son and our 10 year-old-daughter that I had breast cancer. I HAD TO: no doubt I was feeling selfish at this point, the phones were ringing, I was receiving mail and boxes of information and flowers, and trying to hide them. This was making me anxious. We have a full-disclosure rule in our house so we all feel safe talking about anything, but... I wanted to wait, I realized it could turn their childhood around forever. One major hold-up had been that my daughter had just found a lump in her breast. Well, of course we talked about it, the beauty of becomming a young woman. That it would take some time, so she should keep on enjoying her childhood, but I sensed she needed more with what was to come. I called her pediatrician and left a lengthy message on her phone in hopes she would know why we were coming in. I pulled M out of school and told her " I thought you wanted to get checked". It was darling, The Doctor acted like she guessed what it was, where it was and gave her a talk about puberty, while M squirrelled around in the office, smiling. Then she asked her to wait outside. The Doc turned to me and said, "I had breast cancer 12 years ago, how are you?" A lovely personal conversation followed, and she said I should wait a few days, and look M straight in the eye and tell her it can't happen to children. After school M and I went bra shopping, what a perfect series of moments, watching her, so lovely and precious. No ,she didn't need one really, but she needed that day, as did I to always remember.Friday night came around and we sat down and told the kids. We told them I wasn't going to die of this and that it was different than other types of cancers. That the cure would look worse that the cancer, but that it would all be OK. We had a little Q&A and decided to go to the YC for dinner. Good choice, we ran into friends and the moment changed. Teenagers and tweens don't like to feel like there is something weird or different about them or their families, and after dinner the kids ran off with their own friends. Later that night back at home I asked my son if he had told anyone and he said "Yeah!, L's mom has it too and had surgery and is doing great!" Thank God for small favors.....The next week we caught up with that family and it was truly a profound relief. Such power in sharing.So now when I am with the kids in Safeway shopping, I say "No, Safeway isn't trying to raise money just to cure my cancer, but that they are trying to help raise money and awareness to continue to find the cure for all breast cancer." Posted by Direct Designs Home at 4:45 PM 0 comments
Email This BlogThis! Share to Twitter Share to Facebook Share to Google Buzz Thursday, October 28, 2010SLOW DOWN, It's Only Cancer I found out when a friend of mine started chemo.
I have been very lazy about mammograms, health appointments in general. So one Monday morning, 9/20/10, I decided to catch up. I updated a few existing orders, called and made appointments, hopped in the shower and found a dime-size pee under my arm (which, apparently is part of my breast). I knew it wasn't great as: 1. It was rock hard, 2. didn't move around, and 3. Didn't seem to be a lymph node location.
This of course, expedited EVERYTHING. Wednesday: OB-GYN, Thursday: Mammogram, Friday: Mammogram, Sonogram, needle-core biopsy, Mammogram.
That long bad week include: Court with my thieving Contractor, Crashing my one-year old car into a mailbox, a weekend with a nasty stomach flu, and the following Monday, in Best Buy, the phone call that I had cancer.
I felt so sorry for the PA who called me on my cell. I wanted to console her. She kept saying "are you alone, do you want to sit down, can you call me back?" Finally,"it's bad news", duh. Jeaneau, it's OK, just tell me. You have "poorly differentiated ductal cell carcinoma" I am so sorry, you need to call a surgeon right asap. Me: It's OK, thank you, I am glad you are the one who told me....
OK, I can do this, call husband (out of town, phone off), call girl-friend who said OH NO, call girl friend who was very open about her cancer a few years back, and I walked out of the store without buying my computer.
Hiding a cancer diagnosis from two tweens is pretty difficult. First you get SO many calls, then paperwork, tons.That was making me TENSE, more on that later.
Lucky for me, I live in a community where one out of eight women get breast cancer, so I know a LOT of survivors, and Doctors, Surgeons, and nurses as well.
Got a hold of hubby who came right home, and spent the next day on the phone with his best friend Rad-Onc (and like a brother to me) talking about the disease, and with my son's friend mother who we carpool with (famous breast surgeon in SF). Kind, thoughtful, informative. Everyone kept saying SLOW DOWN.
Now, for the record, I always move fast. But this time I wasn't thinking about doing anything quickly. I was in information gathering mode, and wanted to know what I needed to do and when, where and with whom.
WEEK One of diagnosis: First, I realized I needed more information and maybe allies. I called the Cancer Care Clinic, where they have a "Nurse Navigator" who is always available. NICE, she said "come-right-in".
Husband (Mike) and I get off the phone, race over, register in a room with 15 plus women waiting in the center, and get whisked upstairs.
I mention that I could create a little notebook system for them, to write everything down in as my diagnosis was still on a Best Buy Brochure, and she smiled and handed me a 1.5 inch binder called "My Journey" filled with everything I would need to know. Wow, I thought, this is going to be a piece of cake. We covered Surgery, Radiation, and Chemotherapy, alternative treatments, life-style changes and how to "navigate" these appointments, and, I thought: doctors and medical offices, appointments, and lab work.
SLOW DOWN, she said. "Most likely this cancer has been in your body for several years and you can take your time making decisions and it is going to take time to get these tests approved by your insurance company" Ummm, I think I can handle the insurance company since I know have time on my hands. I don't want to wait weeks to see doctors. Why are they all on vacation? Is there a better season to get cancer? When you are making the most important decision in your life, selecting your medical team, shouldn't you be able to interview the Oncologist, Radiologist and Surgeon? NOT with this illness. If you want to move this month, take what you can get. Selection by default. Really: They are trying to "Manage your expectations."
TUMOR BOARD: Mike's friend called a doc who called the collective and they presented my case to the tumor board. They concurred I should see an Oncologist first, and make an appointment with a surgeon.
Well as far as I was concerned, my son's friends mom is the top dog, so I called her cell phone. (YES I know, I am extremely lucky), she was so kind, thoughtful, helpful. "Come in to SF, now, I can help you as a surgeon, a friend, be a partner if you want, make recommendations to other surgeons if you want to stay in Marin...." Wow! I thanked her the best I could and started looking at what the protocol was going to be.
But I am missing information: One breast or two? ER+, HER +,PRO +? Size of tumor?
Nuclear growth or mitosis rate? So, I called the Navigator for the info that wasn't relayed to me on that Monday. She said: Your negative for all three. Yeah! finally, something good. Is there anything else I need to know? No, your doctor will talk with you about it.
MAKE YOUR NAVIGATOR AND ALL DOCTORS AND ALL NURSES WRITE "PATIENT REQUESTS FULL DISCLOSURE" Nowadays, everyone goes home and googles anyway and the first thing I found was she did not give me all the information. Of course, it was 5:00, and I was pissed.
Triple-Negative isn't good. The first thing you need to know is the numbers. She didn't give me the numbers because apparently many people don't want too much information. And to her defense,my numbers were mainly zero. BUT. there was one 1+ in the HER which meant I might have a 10% chance of some additional treatment.
BEST THING ABOUT THAT WEEK: Still wasn't too worried, sent email out to girlfriend posse and requested names, numbers, recommendations, etc. and they were very open and helpful and opinionated. (What I love about you girls).
REAL BEST THING ABOUT THAT WEEK: I brought my car in for repair and the only car they had available was a metallic blue Ford convertible, Mustang. And it matched my cell phone and purse! I drove around like crazy. It was our first heat wave of Indian Summer and I never did learn to put the top up. I decided to rock out and use a little music therapy as well. That gift made me feel so alive, I couldn't be dying.
WORST THING ABOUT THAT WEEK: Information overload, and it wasn't all correct. I consider myself to be "extremely bright-HA" but I could not separate out all the info. I made lists, googled, more lists. Totally confused.
SLOW DOWN, Everyone keeps0 -
Yikes sorry for the big, ugly looking blog post! Just learning about this myself. K
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HeidiToo: LOL!
PinkPeeCA: Welcome and sorry you have to be here but you found a great group of women and support! It sounds like you just started AC chemo and that you are having it prior to surgery. I had TC chemo and then surgery after, too.
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PinkPeeCA: Sorry to see you here but glad you found us! I enjoyed reading your post. I haven't started chemo yet. Actually they're doing more tests to verify it wasn't all DCIS, but if/when I do, it will be TC. I've heard about adriamycin making you pee red or pink. I have 2 daughters and am BRCA2+. Both mine are young adults, but they're being tested for the genetic mutation and will get results this week. Needless to say, we're all anxious about the results. I had a talk with them, mainly to ease their fears in case they come back positive. It doesn't mean they will get cancer, but it does mean they have a greater risk and need to consider options.
I have a question for the rest of the group. Regarding salpingo-oophorectomy and risks. I've been trying to research this, being that I'm 43, and am finding risks associated with long term effects after getting it done. For BRCA2+ people, has anyone here had it done and what age were you? One study I found said there was no difference in outcome between those of us who were 40 and got the surgery vs. those who were 50. So now I'm really confused. I don't want a heightened chance of osteoporosis, dementia, Parkinson's, heart problems, etc. Osteoporosis runs high in my family and I'm tiny to begin with, and my gma had dementia (alzheimers) and parkinson's. For BRCA2+ I'm seeing risk of ovarian being 10-27%, and one site said even lower than that. I was all set to do this within the next few months, but now I'm wondering if I should try to get by with surveillance for a while. Desperately need your advice and opinions... also fear premature menopause. Thanks!!
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PinkPeeCA, welcome to the group but sorry you're here (you know what I mean). As you're no doubt finding out, there's no standard for TN, but sounds like you're in good hands so what ever they are recommending and doing for you should be fine. A lot of us did pre-surgery chemo, some did not. Again, no set standard, just what your oncologist and surgeon recommends. I didn't do your chemo but the pink pee thing is a little freaky. Actually no matter what chemo you're on, I found the whole process freaky but much more tolerable than I imagined in my mind when I was first diagnosed.
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Thanks! You are one year ahead of me! I do 2 more weeks dose dense CA then 4 weeks dose dense Taxol, then surgery, then radiation for 7 weeks. I did take the BRAC gene tests last week, to be more educated about the next step of surgery. Did you radiate? Did you participate in any Parp or VEGH trials? I am in the UCSF/MGH system and there is quite a lot going on here. I now know of over a dozen women in my small (10,000) town who have had BC, but only one triple-negative. She is treating her stage 4 holistically, so you and this posting is HUGE to me. K
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HHey Pink Pee..yeah..I remember the pink/red pee..good thing the nurses warned me about it or I would have be freaking! I also did the the 4 dd ac and taxol plus 35 rads..had a lumpectomy first..as you are finding out TN's are special! Or at least I like to think so!
No comment on the holistic stuff...I think I would have been too scared to NOT do the surgery/chemo/rads..I think alot of us try to combine both...Do the medical part and then the supplements, green tea, exercise route... good foods type of thing.
I know that since I'm eating better and taking supplements and exercising I feel great!
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Pinkpee : Welcome !
Good evening ladies, Just got back from seeing the BS and the PS . They both said I am healing well. I did notice my left breast is a bit warmer than the other so as a precaution she started me on antibiotics. I got the pathology result today and there was no evidence of malignancy on either breast . I am so excited! As youknow I had the Nipple sparing Mastectomy and my left nipple is back to its normal color and my right is almost there. I am so glad I opted for this procedure.
Well, have a great evening everyone.
Lynn and Laurajane: How are you girls doing?
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Monika - glad to hear things are healing up well.
PinkPee - welcome. I like your screen name. I didn't have AC so my pee wasn't pink...lol...but I had blue pee from the dye in the sentinel node biopsy if that counts.
Titan - I agree, I would have been too scared to skip the conventional treatment but am trying to eat more healthy and exercise regularly. I say that as I sit here eating left over Halloween candy. My intentions are good, though...
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Monika: That is such great news! Congratulations!!!
Sugar: LOL!
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