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Laurarev View Drop Down
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    Posted: Jun 16 2019 at 9:16am
Good morning everyone  my name is Laura. I was recently diagnosed with TNBC.

 I am a 46 year old, single mother of a 13 yr old boy and 11 yr old girl. I had a clear ultrasound, mammo, and MR in jan 2019.  Two months later I felt what seemed like a bruise on my right breast. I looked for a black and blue mark but saw nothing. I waited a couple of weeks for it to feel better, but it still felt like a bruise. Within about 3 weeks I could feel  a small lump where the bruised feeling was. I called my OB and he said I most likely had nothing to worry about as I just recently had clear testing in January and breast cancer doesnít hurt. He said it was most likely a clogged milk duct or a cyst and to give it a little time to see if it goes away. I am an elementary school teacher and I was planning a trip to Florida for spring break. He told me there was no rush to get it checked and to go on vacation and we would do a diagnostic ultrasound when I returned. 

Well I had the ultrasound on May 13, 2019 and Iíve been on this roller coaster ride since then. On May 21 I went back for a needle biopsy. The doctor called two days later to tell me it was cancer. It was Memorial Day weekend so I wasnít able to meet with a surgeon until 10 days later who informed me that I had TNBC. I had never even heard of this. 

My sister had stage 0 estrogen positive breast cancer two years ago and is doing great, thank God. I have been to many appointments over the past two weeks, I feel like itís been two years. I am being told this cancer is very different from hers in that mine is ďrare and aggressiveĒ the tumor is small measuring 13 mm, but the proliferation rate is high at 67%. The surgeon and oncologist have decided I will do a lumpectomy first on June 25 followed by ACT chemo (maybe one more thing in addition to that... not sure what it was called) and then radiation. We will not know until surgery if it is in the lymph nodes, but theyíre thinking itís not. 🙏🏻 I am very scared to say the least. 

My maternal grandmother also had breast cancer in her 40ís but she was in remission for 25 years. My sister had the myriad BRCA test and was negative. Sloan Kettering is doing an impact test on me which will look for 89 mutations. 

Does anyone know of a specific diet we TNBC patients should eat. Everything on the internet is so confusing and it seems like there are foods we should or shouldnít be eating that differ from the other types of breast cancer. For example, Iíve read that avocados, broccoli and salmon are not ok to eat. How can that be?? Iím so confused. I just want to be as healthy as possible as I begin the fight of my life. Iíve started juicing carrots, celery, turmeric, ginger, beets, and sweet potatoes. Do you know where I can find a list of foods specifically for TNBC. 

Also, any advice on how to tell the kids? I went through a very tumultuous divorce two years ago. The kids have been through so much already and I want to handle this as gently as possible. So sorry for the very lengthy post. Any advice would be so greatly appreciated. 

Laura 
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Hi Laura

I'm so sorry you are dealing with this diagnosis.  It's very scary to hear those words and see how quickly your life can change.  The period from diagnosis until you begin treatment is the worst.  I'm sorry your doctor said cancer doesn't hurt.  There are quite a few members who will tell you this is exactly how they found their cancer.  The best advice is if it doesn't feel normal, get it checked out.  I'm glad Sloan Kettering is doing an extensive genetic test on you.  Many people only think the BRCA genes are associated with breast cancer, when that's not true.  They are finding many more genes connected with breast cancer so a full gene panel will help you identify if there is a genetic connection. 

Can you ask your oncologist office if there is a social worker you can talk to?  They may have some age appropriate advice for speaking with your children.  Other members with children similar age might be able to share how they broke the information.  My children were in college so I was able to talk to them as an adult and be very honest with the situation.

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Jun 16 2019 at 8:06pm
Hello,

I am sorry you are joining this site.  But, it is a good place for information, hope and encouragement.  I also went to Sloan...I was diagnosed December 2017 and had a lumpectomy, 4 ac and 12 taxol and 4 weeks of radiation.  My tumor was 1.6 cm and no nodes involved.  My only side effect from chemo other than hair loss was being very tired.  I slept a lot.  

So, you are asking about food.  My doctor suggests no meat.  I tried that...but the beans and carbs were keeping weight on me.  So, I do a little bit of organic chicken each day and I have heard the mushrooms are good for you.  I marinate and cook assorted mushrooms and enjoy them every day.  I avoid sugar as well. I do not eat cheese, drink alcohol or use milk. There is a good book out there, that you can get from the library by Patricia pritjatel ( I hope I spelled that right)  ďSurviving triple negativeĒ and it was helpful.  

Stay positive, it is scary in the beginning...a lot of important decisions and you can get overwhelmed.  But, I feel great and I read a lot and have learned a lot.  Stay strong, read and inform yourself and sloan has nutritionists and intergrative oncologists too.  Tap into those resources.

I will keep you in my prayers.
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Laurarev View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jun 16 2019 at 9:19pm
Thank you Marymom. I am going to look into purchasing that book! I have been reading as much as I can on the internet, but not sure if Iím getting all accurate information. I also heard that mushroom are good, and not to eat meat or dairy (and of course, no sugar) 
I am meeting with a social worker at Sloan the  day before my surgery when I go to get the seed and the dye. I will inquire then about a nutritionist. 
Thank you so much for your reply
Laura 
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I am going to meet with a social worker at Sloan the day before my surgery next Monday. I would like to talk to the kids this Friday after their last day of school, so Iím going to have to see if I can ask the oncologist this Wednesday if he can set me up with a social worker at his hospital (I am doing my chemo at a more local hospital than my surgery)  I would like to get some advice so they arenít scared. 
Thanks for your reply Donna:)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 16 2019 at 10:24pm
Laurarev- I couldnít help but laugh at your Ďhow can that beí comment. Iíve been researching myself stupid since Wednesday when they told me Iím TNBC.  The one thing I thought I could control while I play this waiting game with doctors and insurance, with my diet. I had the exact same reaction 😂😂. It appears room temp water and wood chips are the only thing that havenít been listed as bad for me at this point 🤢
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 11:25pm
Danzig482-I know! This is crazy. What the heck are we supposed to eat?
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sawdust and luke warm tap water, in moderation 🤷‍♀️
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2019 at 8:03am
Have you had your Vitamin D level checked?  Most of us found out we were deficient at the time of diagnosis. 

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Hi Laura, 
Just returning to this forum after a couple of years break. Just read your posts and was hoping to be of some small help. 
I was 46 too at time of diagnosis. TNBC, right side, 2cm tumour, grade 3,  no node involvement. I had lumpectomy, dose dense chemo and radiation. Just coming up to 7 years with no recurrence. Mammogram next week just to be sure! 

With regards to how best to tell children. At the time mine were 24, 22 and 7 years old. I found telling them ( and everyone else for that matter!) very difficult as you are trying to understand it all yourself, let alone frame it all for so many different people. 

My biggest concern was telling my 7 year old. The best advice I received was from my Breast cancer nurse. She advised me to tell him before treatment started, give as much information as you think he needs at the time. She advised that young children often blame themselves when a parent becomes sick. She was so right! The first thing my 7 year old said was Ďdid I do this to you mummy, did I hurt you when I jumped on you?í. I reassured him that mummies get sick sometimes and itís no ones fault. 

This nurse gave me a lovely book to read to my youngest called ĎThe Year of the Pale Sunflowerí as itís designed to assist you in telling children about breast cancer and possible treatments. It was a little too old for him but may be perfect for your children. 

Try not to read too much on the internet except for reputable sites and sources. I found this forum to be amongst the best and very reassuring. 

I could never imagine being 7 years post treatment back in that awful first month, but here I am! Take one day at a time was also good advice I received. 

My youngest is now 14, he remembers quite a bit from that year of treatment, we still talk about it and I remind him how brave and helpful he was for such a little guy! 

Best wishes for the coming weeks, this too shall pass. 
Donna

dx 25/05/12 @ 46yrs TNBC 2cm Tumour, Grade 3, Lumpectomy 0/5 nodes, DD AC & Other Chemo, Radiation
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2019 at 5:32pm
as a matter of fact I had bloodwork done about a week before I even knew I was going to need a biopsy and it did show that my vitamin d levels were low 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2019 at 5:46pm
thank you for your post Donna 
First and foremost, congratulations on 7 years without recurrence. That is fantastic! It certainly does give me hope. 

It sounds like your order of treatment was the same as mine is going to be. Lumpectomy first, followed by chemo then radiation. What does ďdose dense chemoĒ mean? How long would you say it was from diagnosis til end of treatment? My surgical nurse said to figure about a year. 

Yes, I  am worried about how the kids are going to take the news. to say the least. I am going to try to minimize it as much as possible, but yet I will be telling them I have cancer (still feels so weird to even type it) and that I will be taking medicine called chemotherapy that may make me nauseous and tired. I am  definitely going to look into that book you mentioned. Thank you for the suggestion. 

I am going to try not to look at the internet too much. I am so glad I stumbled upon this forum. I agree that it is very helpful to discuss TNBC with real people in terms I can actually understand. I was really worried about what I should and shouldnt be eating, but I was driving myself crazy looking up so many conflicting studies on the internet. 

This too shall pass, you are correct! I am a fighter and I plan on giving this ďfightĒ everything Iíve got. I have two beautiful children depending on me, and I plan on sticking around for a VERY long time! 

Thsn you for your support:)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2019 at 7:36pm
Laura,

I'm glad you found out what your Vit D levels are.  I didn't learn I was deficient until after finishing chemo the first time.  As one of my onc's told me, it's never good to be deficient!  It took a while of taking Vitamin D3 (you don't want D2) before I got my levels up, but they've stayed there ever since.  I take 5,000 ius of D3 a day.

Actually this month is my 10th anniversary from being diagnosed and having a bilateral mastectomy.  Sometimes it seems just like yesterday and other times, like a lifetime ago.  I've been in remission from the recurrence for 8 years now and like to think it gives others hope especially when the recurrence could not be surgically removed.  All I had was chemo and radiation to try and stop it.

Regarding the timing, usually you start chemo within a few weeks of healing from the surgery.  The chemo A/C is often given every 3 weeks x 4 cycles, then Taxol is given dose dense (meaning more frequently).  Taxol usually lasts about 12 more weeks.  There are some who get it weekly x 12 and others every 2 weeks.  Then there is usually a few weeks healing from chemo then radiation. 

You may be surprised how your kids respond.  They are stronger than you realize and will rally around you to be there for you.  Sure they will be scared, but reassure them you are a fighter and they are the reason you are fighting so hard!

Don't worry too much about what you eat.  Try to eat healthy and stay active if you can.  Some days walking up a flight of stairs felt like a marathon.  During chemo your body will let you know what you can handle.  The first time it tore my stomach up that all I wanted to eat is what I call white food - vanilla yogurt, turkey, applesauce, bread.  Spicy foods, coffee, even peaches, tore my mouth and stomach up.  They will give you some good anti-nausea medicine.  I can honestly say I never got nauseous from chemo.  I know others have, so if you are having any symptom, call the chemo nurse and they'll try to help you or call in a script to alleviate the symptom. 

Keep us posted,

Donna


Edited by 123Donna - Jun 19 2019 at 7:57am
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Hi Laura, 
As Donna (nice to see another Donna! 😀) mentioned, dose dense means more frequent doses. Because of my particular circumstances (grade 3 TNBC and size of tumour etc) they offered me the AC chemotherapy component more frequently than the regular 3 weekly dose. I had it every two weeks instead. This was particularly tough but I was advised it would increase my chances a little ( just 2-3%) of a better outcome. Like you I was prepared to do whatever it takes. Your chemo will be tailored to your circumstances. I live in Australia but think there are standard protocols internationally. 

Another thing I did for my little one, as soon as I knew I would be having chemo, I talked to his teacher about my diagnosis. I asked her to keep a bit of an eye on his behaviour to see if he was coping ok with it all. I also took him shopping with me for hats and scarves and I started wearing them every now and then before I lost my hair. By the time I did he was used to the hats and scarves. With children I think if you are ok about it all, so are they. 

Sounds like you are adjusting to this news and these changes very very well! 

Depending upon your particular circumstances, early stage Breast cancer treatment takes approximately 9-12 months. Allow a year is good advice. Some days will go slow, some fly by. Bizarrely, my daughterís friendís mum was diagnosed at the exact same time, very similar diagnosis. So actually this helped me understand how common this disease is and I was able to worry less. 

Donít obsess about the food, eat healthily and eat what you feel like eating at the time. Like Donna I wasnít too nauseous with the chemo. See how you go each day, as each day will be different. 

Keep us posted! 
Donna 😊

dx 25/05/12 @ 46yrs TNBC 2cm Tumour, Grade 3, Lumpectomy 0/5 nodes, DD AC & Other Chemo, Radiation
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Hi Laura,

I was diagnosed in December 2018 and have two young children ages 6 and 8. I also am being treated at Sloan. I did contact the social worker who helped me on how to tell them as well as provided me with resources. It was a huge help.  I was very honest with my kids and updated them after each appointment, that seemed to ease their worry a lot throughout. I tried to keep all talk as positive and hopeful as possible. I gave the heads up about me being tired and losing my hair but I did it in stages. The social worker informed me it would be many conversations along the way.

 I did 8 rounds of chemo (4-AC and 4 Taxol) every two weeks followed by lumpectomy and currently finishing out radiation. I was declared NED (no evidence of disease) as of April 30th! The beginning is the hardest part but I have found many great resources along the way. There is so much Hope and Positive with this journey. You just have to steer clear of the negative (no pun intended). 

I have been slowly adjusting my eating habits but as my oncologist advised, everything in moderation. 

You will be in my thoughts and prayers...you got this! 

Jess 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jun 19 2019 at 2:20pm
Hi Jess,

I am sorry to hear you have had to go through this ordeal as well.
    I just finished up an appointment with my oncologist. I also will be doing 16 weeks of chemo ( 4 rounds of ac followed by 4 rounds of taxol every other week).  How long after chemo ended did you start up radiation? And how long does radiation last? 

I met with the chemo nurses too. They said that they have yet to see someone with AC chemo keep their hair even when wresting the cold cap. Did you attempt to wear it? I really wanted to try it but they told me not to get my hopes up. Well that just sucks 😥 

I will try to stay as positive as I can through all of this. The oncologist  said there are three things I can do on my end.... stay positive, walk or exercise 30 min a day (even if I cry through it) and get some vitamin d through sunlight every day! 
 
Congratulations on being declared NED!!! That is fantastic news!!! 

You are in my thoughts and prayers as well:)) 

Laura 

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Hi Laura,

Chemo ended for me on April 5th. I had a lumpectomy on April 30th. I started radiation on June 3rd. I had a few appointments prior to starting radiation (scans and measurements had to be done). My understanding is it is anywhere from 3-4 weeks after surgery before radiation starts to let body heal and for bloodcounts to come up.

I did not attempt the cold cap. I decided to shave my head. I am a bit of a control freak so I wanted to take control of the situation in any way that I could. It was very liberating and I actually liked the way I looked with it. This process is very individual and what works for one may not work for another so follow your gut and what you are most comfortable with. If you want to try the cold cap, go for it! 

I have been slowly adjusting my eating habits as they werenít great prior to this but it is a gradual process. The walking every day has truly helped me.

There are good and bad days throughout this. It is okay to not be okay somedays...lean on others for support and accept help wherever you can. 

The TNBC community is supportive and inspiring! Reach out anytime! 

Jess 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2019 at 5:32am
Donna in reference to the chemo cycles you mentioned here - do you have any info or even personal opinion regarding the taxol every week vs every 3 weeks?

Also same question on carbo, cons of using. I was recommended to do either ac 8 weeks taxol 12. Or taxol and carbo 12 weeks then ac 8.

Think Iíve finally wore myself out researching so I can be prepared at appts. This recommendation was by the jh onc but the surgeon (and onc) suggested I do chemo at home for safety of being established at home if there is a complication (to keep me out of Er with god knows who on staff).
So now Iím thinking I will just like or pass out (kidding) when I see the onc here and they tell me something completely different. 

But assuming I chose one of the 2 above options I donít know if there are different strengths of those drugs to not overload the heart etc unique to each patient or its a one size fits all. Also have no clue where to begin making an intelligent choice on whether to try carbo. Like I said Iím. It sure ifnim just exhausted or the wealth of info is getting blurry. Maybe both 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2019 at 6:37am
I think itís different for people who do chemo before surgery rather than surgery followed by chemo (which is what Iím doing) but I will try to help answer your question as I just asked something similar when I went to see my oncologist yesterday.  

I asked about the carbo for me personally. He said it is only offered to patients who receive chemo before surgery. He said it is tacked onto the taxol and it is a super extra boost and very good. 

As far as the strength and duration of the chemo. He said it is individualized according to the patients height and weight... and something about body mass something or other. I asked about the chemos effects on the heart. He said it can cause some heart issues  if given in high doses over 400. 

Usually the ac is given in 4 rounds every other week for 8 weeks. The taxol can be given the same way (4 rounds over the course of 8 weeks) or one round a week for 12 weeks. He said most people assume that the twelve weeks is more chemo and stronger but itís actually not. Itís (for lack of a better description) a diluted version by stretching it out over the 12 weeks. 

I also met with the chemo nurses. My oncologist had sent me over to them to get measured for the cold cap and discuss how to use it. They were really sweet and felt terrible telling me, but they said they have yet to see anyone undergoing ac chemo be able to keep their hair. Itís just such STRONG sh*t. They said a lot of young girls with beautiful long hair try it anyway, and after one round the hair is falling out in clumps anyway. I am pretty crushed about this, as I was really hopeful about keeping my hair  Anyway, I went to my stylist last night and cut 5 inches off of my hair... just to somewhat prepare myself for whatís to come 😥
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2019 at 11:42am
The chemo dose is based on what massive long term studies show has the best effectiveness killing our disease. Calculated to your size like most meds. Just out of curiosity I read about the evolution of chemo drugs way back in the beginning. Fascinating stuff, especially Taxol. Each drug kills cancer in a different way, in a different timeframe, a lot goes into the combos and doses. Then there's the science of the anti nausea drugs - without those many drug doses we do wouldn't be tolerable. They all work in a different way, most work on your brain signals not your stomach or digestive system. That's why you need to be proactive if you have severe nausea or vomiting - you should NOT be vomiting. That's a sign you need to try different drugs. it's crucial you follow instructions on doses - write it down, set alarms to take them on time. You want to stay ahead of the side effects, not try and beat them back once you're really sick. Resting and sleeping when your body says you need it is important. You re putting it thru extreme things, treat it kindly. Keep getting calories down is important too, and lots and lots of water. As your white blood count dwindles, remember that's your immune system. Avoid crowds, sick people and children if you can. A cold or a tummy bug can land you in the hospital and derail your chemo time line. As your red blood count drops you become anemic. Fatigue from anemia is a beotch, again rest as needed. You need iron to combat the anemia and the only way to get iron for chemo induced anemia is food. Research iron rich food and eat as much as you can stand. In the run up to surgery you should up your protein intake, it promotes healing. Discuss that with your surgeon. .I've yet to meet anyone that kept their hair during these chemo drugs we do. Once it starts falling out your hair feels......dead, crispy and uncomfortable. And it's EVERYWHERE. It feels like fine strands of hay poking your scalp. It was a relief to shave it off both times. Some insurance companies pay for a wig, a prosthetic hair device or something like that. Ask them, if they do your doctor will write you a wig prescription (insurance pays for fake boobs, prosthetic breasts, and the bras to hold them. I have 3 pair so far, all different. My husband like s to say, "put on your big boobies honey, I'm taking you out!" Lol. But I digress. ...). I mostly did scarves. The second time I mostly just went bald. I got an extraordinary amount of compliments on my bald head..folks were probably just being nice, but I decided to just take them at face value. Not shaving my legs for months was just plain awesome. My hair came back as thick and lush as ever, and quite fast after stopping chemo. Honestly, once you're in the midst of chemo, worry about your bald head fades away, it's just not important. I'd focus on ice baths for your hands and feet during Taxol. Neuropathy is a REAL problem and can be permanent. Way more important than the fur covering your head temporarily disappearing. 
Cancer has a way of showing you how to get your priorities straight. It's a terrible way to have to do that but my husband and I and Even our kids are very much benefiting from it now every day. My husband and I are having way more fun now in many many ways. Without a doubt you will be different after all this is over, it's up to you to figure out what that means. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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