Newly diagnosed 10-1-06

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jpann39
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Date Joined Nov 2006
Total Posts : 71
   Posted 11/10/2006 11:06 AM (GMT -7)   
I have just found out that I have invastive ductal carcinoma... I found a lump in my breast so had my primary Dr. check it, she immediately ordered a diagnostic mammogram...they did that then immediately did an ultrasound, the radiologist didnt like what he saw so asked to do a needle core biopsy right then and there...two days later the Dr. called and told me I have breast cancer...the next day I met with a surgeon, he ordered chest x-ray, blood work, EKG and I had a breast mri done yesterday....and another appt with the surgeon Nov. 14th.
I am scared beyond belief...so far no one has told me anything more that what I wrote above....
I have tried to research on the internet and found it helpful but very frightening...my girlfriend was searching the web to help me and found this site and thought it might help to talk to others in my shoes...
 
I have no idea where to go from here so was hoping some of you could help lead me in the right direction.

Jo-Ann
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Date Joined Jul 2003
Total Posts : 829
   Posted 11/10/2006 4:23 PM (GMT -7)   
You don't need to go any place else but here. We have all been through what you are experiencing now. We can't take away your fears and apprehensions but we can understand them. Just start telling yourself, "I can do this" and "I will do this".

The surgeon will tell you what your options are and what his recommendation would be. Just ask him if he would make the same decision if it were his wife who was in your chair. Be sure to start taking someone with you for these initial appointments, surgeon, oncologist, radiologist, and a tape recorder or pen and pencil. Write down all of your questions before you get there and be sure someone writes down the answers.

Above all, try to hold it together. It's all right to be scared, we have all been. It's okay to cry, to ask why me, and to just vent. That's why we're here.

Treatments have changed so much since I was dx'd but our emotions are all the same. Hang on, we'll launch the PCE for Nov 14 and will surround you with pink boas and feathers and warm hugs.

Sorry you had to find us, but glad you did.

Welcome Hugs, Jo-Ann
A good friend will bail you out of jail...
but a true friend will be sitting
next to you saying,
"Dâmn... that was fun!".


jpann39
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Date Joined Nov 2006
Total Posts : 71
   Posted 11/10/2006 4:50 PM (GMT -7)   
Thank you JoAnn,
 
This has all been so scarey for me...the unanswered questions and the waiting are the worst.
I live alone so its really bad at night time.
I spend hours on hours on the internet researching and reading, but without knowing what Im looking at it just seems to scare me more.
My Drs. office gave me a book and that helped a little but again without knowing what Im fighting its hard to make it all make sense.
 

Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 11/10/2006 7:10 PM (GMT -7)   
Jpann, wow, I feel for you! I was diagnosed Nov. 30, 1999 and your posts sound just how I felt...we all felt that way. The fear can be overwhelming, but try to break it down one step at a time, one day at a time, one hour at a time. If the reading is too much, take a break. I too read what I could, and I tried to stop when it became too much. The first few days are a whirlwind of information, stats, questions, appointments, tests and more tests.

I bought my first computer in honor of my diagnosis, figuring I would need support. I found this group of women, many of whom still post here today,a nd they cheered me on through surgery and chemo and rads...and we all are here for each other through lifes ups and downs and in betweens.

Yes, the questions and waiting are the worst part of it..tell yourself that you CAN do this and the worst will be over soon. For me, knowledge was power and I needed to be in control. I needed to DO something. Just making appointments and having a PLAN was empowering for me. I cried every day for the first week in between diagnosis and my next surgeon appointment. I walked out of there with several appt slips in hand and a new sense of control. A great piece of advice that I can offer is to make a list of questions and bring a tape recorder with you to the appointments. That way you can go back and listen and take notes and make new lists later, in the comfort of your home.

And as for decisions, take your time. Read, talk to us and get a second opinion if you are not sure. And remember that statistics are just numbers....they tell the overall story and try to predict what should happen, but no one can say what will be for you. JoAnn is a great statistical story....she can tell you what low odds they gave her to live a couple years and she is over 10 years out, still cancer free. Pooey to the stats!

Where do you live? You may want to contact ACS or your local hospital for support group information too.
Hang in there...these first days are definitely the worst and things should only get better...
Lori


Vegas
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 11/11/2006 8:33 AM (GMT -7)   
Hi Jpann,
 
I was just diagnosed with invasive ductal carcinoma as well on Nov 7th, and let me tell you, I have gone the gamut from the primal screams to crying so hard I can't breathe to withdrawing from everyone and not answering the my phone. I have browsed the Internet as well and scared the he... out of myself - sometimes the stories there just make it worse. Yesterday was actually the first day I could get through a conversation with anyone without breaking into a complete meltdown. I know just how you feel, we are probably about at the same place together and I am so going to put you in my prayers.
 
You are right - the unanswered questions and waiting are the worst. I am just praying that when they get in to do the surgery the cancer will not have spread to any of the lymph nodes.
 
I found my own lump too on October 18th (I just now realized what date it was - this was the birthday of my beloved mother in law who died from cancer 10 years ago - I think she was looking down that day and helped me find that lump! Now I have goose bumps!) I went in to my OB GYN who also immediately ordered a diagnostic mammo and ultra sound, though I could not get in for the biopsy for another 10 days.
 
You have a right to get all your medical records free of charge - I made sure to get copies of all my films and path reports from my surgeon thanks to the wonderful women on this forum - so I could get a second opinion if necessary. You need to know how large your lump is and where it is in your breast and they should have also done hormone reports for you. I have made the decision to have a mastectomy done with reconstruction - I am too small breasted for a lumpectomy to do any good and my surgeon said cosmetically later it would probably end up being better that way anyway. In an effort to give myself something to look forward to, I am going to go for bigger boobs, so I will have the other one enhanced to match. Just being able to reach that one decision has made me feel a bit better (though of course that comes and goes). Now I am making lists of all the things I want to do (that I enjoy that somehow I never get time to do) for while I am laid up to give me something positive to look forward to.
 
We can do this Jpann (by the way, this pep talk is as much for me as it is for you). Hugs from one who is with you all the way.
 
Diane

jpann39
Regular Member


Date Joined Nov 2006
Total Posts : 71
   Posted 11/11/2006 9:42 AM (GMT -7)   

Vegas

Thank you for the pep talk...I hope it helps you as much as it did me this morning.

If you name here is any indication of where you live we are not all that far apart..I live in Southeastern Washington.

I have an appt with the surgeon on the 14th and am sooooo hoping I will have more information then. It does sound like we are in about the same boat with all this, other than I havent made any decisions between the lumpectomy or mast. I as well am smaller breasted and from everything Ive read it sounds like I might not have a choice anyway.

When my primary dr. measured with a tape measure she said it was approx. 2 cm but no one has told me the size after any of the other tests that have been done.

I think after this next appt I will feel somewhat better armed to deal with this (or at least I sure hope so). Everyone keeps asking me if there is anything they can do and its hard to not know what to tell them when they ask questions.

I will keep you in my thoughts and YES, we will get through this

Jule


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 11/11/2006 10:07 AM (GMT -7)   
Hi Jule-
Looks like you and Diane will be right in the same place with your journey. I had a couple of gals from here who were within the same schedule too and it helped to have a chemo and rad buddy, even if on the 'net. I would also recommend getting copies of your reports. Records can be sent to other doctors, but I found it empowering to have a copy of my path and test reports. I could read, look up words and just have something concrete to hold on to.
My sugery was on Nov 30, and I got my dx that day. "You have cancer, we need the path results, but you'll need more surgery and maybe chemo and maybe a mastectomy. See me next week." Ok, it was not that crude but the message was the same...here is a little bit if horifying news, but you have to wait a week to find out anything else. That was the hardest week of my life, I cried every day and every night. Then I got my path report, cried that day, and then had a new sense of courage and fight and determination. I never looked back from that point. Hopefully yours will come soon too!

And for all the frightening stories out there, there are thousands of happy endings that you never hear about because they are all out there living life!

Lori


Vegas
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 11/11/2006 11:24 AM (GMT -7)   
Hi Lori,
 
Yes, you are probably right, there are thousands out there that are living nice long healthy lives! I did just find out from my mother today, that my great grandmother had a mastectomy at the age of 60 and lived into her 90s. Of course, who knows if she actually had cancer or if it was just a cyst since that was over 50 years ago and I think a lot of mastectomies were performed "just because" then. (Right now I am having a little anger issue at my mother who never told me any of this until now. I had told all my docs there was no history of cancer in my family at all, and now I find out that my grandfather also had prostate cancer. I am sure I will get over it.)
 
Jule, it seems like you and I can go thru this together. I also just talked to another "survivor" today. A friend of a friend who is also small breasted, had invasive ductal carcinoma and elected to have both sides done rather than worry about it coming back later. She had reconstruction with silicone implants done and says they look great. Took her about a year and a half total to get through all of it, though some of that was because she put off a couple of surgeries as her daughter got married, a vacation, etc. She never had chemo. Says that actually the only really painful part was when they pulled the drains and that is a just a short one time pain. I guess if I went thru child birth I can handle something that only lasts a minute or two.
 
Yes, I am in Vegas, and was actually hoping to go look for a second home this winter in southeastern Washington. Where do you live? We are looking for somewhere to get out of the summer heat! :)
 
Diane

jpann39
Regular Member


Date Joined Nov 2006
Total Posts : 71
   Posted 11/11/2006 7:59 PM (GMT -7)   
Diane,
I live about 20 miles northeast of Walla Walla, but if you are looking to get away from the heat this isnt the place...it gets very hot here in the summers but is tolerable if you enjoy the mountains and rivers. I spend alot of time at both.
 
and YES, I think we can make it through this together...now that some of the initial shock is wearing off Im feeling a little better about things, but I know it is only a short reprieve from all the terrible feelings and fear that I know are still ahead. But I also know I can do this and come out of it fine in the end.
 
I have thought of the idea of just doing a mast and reconstruction but have decided to try to just put away all the thoughts and worries about this until my appt the 14th with the surgeon...have decided this is not going to control me and until I know for sure what Im looking at nothing is going to change so for now Im not going to worry about it (big talk for a small girl, huh?)....but Im giving it a good try anyway...
 
You have kids? How many? Ages? Girls/boys?
 
I have two, my daughter has been a wonder, holding my hand through everything so far and will be there all the way. My son is still in that shocked stage but he is doing ok. When he called today he asked when my next appt is so that he can schedule the time off work to go with us so that he can get a better understand of whats going on for me and how he can try to help. They are both wonderful kids and Im very fortunate to have them.
 
Take care, talk again soon
Jule
 
 
 
 

Vegas
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 11/11/2006 10:46 PM (GMT -7)   
Hi Jule,
 
I have two boys, 19 and 21, and they have been great. My husband was out of town with the youngest one when I got the call, and the older one left work to come over and sit with me and hold me until they could get back. (Both kids work for us so they won't have a problem getting as much time off work as I need them to!) 
 
I had a bit of a rough patch today after I emailed you last. All of a sudden I could not breathe and I had no energy at all - felt like I had been sick for a month after being hit by a train and was weak as a kitten. I went to bed in the middle of the day and slept for 5 hours straight. I am still having a bit of problem breathing - is that normal do you think? I am thinking maybe that is depression and a panic attack rolled into one. I have never had one before, but it gradually seems to be wearing off. I can't talk to the plastic surgeon until Thursday, and I am with you, I am going to try and put it out of my head for a few days. I am thinking perhaps I should try and get some Christmas shopping done, as I am not sure there will be time later, and with the schedule you and I look like we are on, I probably cannot do my usual Christmas Eve at the mall thing. (I absolutely hate shopping!) Maybe I will start buying stuff on the Internet. Too bad you can't buy good health on Ebay.
 
Make sure you call the surgeon and have him get copies of all your medical results ready for you. I have made a pink folder for all of them. :)
 
Diane

postal2
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Date Joined Jul 2003
Total Posts : 1106
   Posted 11/12/2006 12:45 AM (GMT -7)   
Hey Jule, just wanted to welcome you and say I live in Southeastern WA too! I am in the Tri-Cities. Kennewick to be exact. Stay with us, this is a great group. They have been a lifesaver for me!
Gail
  It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had.
 
Elisabeth Kubler Ross


jpann39
Regular Member


Date Joined Nov 2006
Total Posts : 71
   Posted 11/12/2006 8:22 AM (GMT -7)   
Diane,
Yes, I think what you had happen yesterday is normal, someone else told me that the stress of trying to deal with what we are can knock the wind out of your sails like that..so far I havent had it happen, but I do spend alot of time alone, it just seems easier right now.
 
I have thought about the holidays too...I was suppose to have Thanksgiving at my house but when I found out about this I told people that I wasnt sure I could it this year...they all rallied and said that we could still have it here but they would do everything...obviously I have wonderful family and friends.
 
Thats funny!!!! I too hate shopping...the online shopping is a good idea, think it will arrive in time?
 
My mom, I and my best girl friend are going to start our xmas shopping today because I as well am worried that I might not be able to do it later....
 
I hope you are feeling better today, talk again soon
 
 

jpann39
Regular Member


Date Joined Nov 2006
Total Posts : 71
   Posted 11/12/2006 8:25 AM (GMT -7)   
Postal 2
 
Hi, its nice to know there is someone close. I was told that there isnt anyone in Walla Walla that does breast reconstruction but there are several in Tri-cities.
Did you have reconstruction? and if you did, did you have it there local?
 
Jule

Vegas
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 11/12/2006 8:47 AM (GMT -7)   
Hi Jule,
 
Much better again today. I suspect the talk with my mother had something to do with the blues yesterday. We are not close and every time I talk with her it depresses me anyway. Her reaction to my news was that she had had two major surgeries and gone thru child birth with no drugs and this was nothing. (It's always all about her) Right now I am going for a walk with my husband and then we are going to go out and buy a tread mill and flat screen TV for our loft so I can walk after the surgery no matter what the weather is like outside. I read that if you walk at least 4 to 5 hours a week it helps decrease your chances of cancer coming back. This is one form of cancer reduction with only positive side effects - I will take anything like that I can get.
 
How old are your kids?
 
I was about to cancel Thanksgiving dinner too, but then realized that was really stupid. I am still amazed at all the support and love I am getting from the people around me - I truly have a ton to be thankful for!

jpann39
Regular Member


Date Joined Nov 2006
Total Posts : 71
   Posted 11/12/2006 8:57 AM (GMT -7)   
Good Morning
Im sooo glad to hear you are feeling better today....I have a sister in law that sounds alot like your mother, (all about her)...I am so thankful that my mom and I are very close...
I am the only girl out of 5 kids so she and I have always had to take the female stand together in our family :)
 
I have started excersizing more myself...I will try most anything that will help too...I do find that when I feel myself starting to get a little blue if I excersize sometimes it can stop it from going to far...you might get yourself a walkman, while Im doing my treadmill I listen to music so it helps keep my mind busy too.
 
I hope your walk is wonderful this morning, it is a nice day here today so my nephew and I plan to spend some time raking leaves, the a drive to the mountains to play in the snow and hopefully for a short horse back ride.
 
I had my kids young in live as I will turn 46 the 15th. My daughter is 27 and my son is 25. The nephew that I just referred to is my youngest brothers boy, (a single parent) and I spend quite a bit of time with him, he's a great kid.
 
 

possitive
Regular Member


Date Joined Mar 2005
Total Posts : 239
   Posted 11/12/2006 10:08 AM (GMT -7)   
Jule and Jpann,I too had Ductal Carcinoma 2 cent.Mass.1 possitive lymph node,chemo,left breast removed and had right breast removed by choice.Ovaries removed and now having gallbladder removed because of gallstones,all of this in 1 year.Its very scary to find out you have Breast cancer but stay strong and allways possitive fight this darn disease with all your mite,never give up!The ladies on this forum has helped me so much through my journey.I asked God to carry me through this journey and he did and he will carry you too.Your both in my prayers,  Tammy

 


Vegas
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 11/12/2006 10:44 AM (GMT -7)   
Good morning Jule,
 
The horse back riding sounds fun! My husband hates horses but he wants so much to please me right now, maybe I can get him to take me for a "pity" ride! :) We just did a 3.5 mile walk around our neighborhood - our neighbors that were out were teasing us cause we were holding hands. One of them told us we were doing a "love" walk.
 
Boy you sure did start early with your kids! I was almost 32 when I had my first one. I have one full sister and a half sister and brother who are young enough to be my kids if I had started at your age. But in our household now I am the only female in the family - even the dog and two cats are male.
 
I do have an ipod, but more than that I actually love books and I plan on reading while walking on the treadmill. The TV is for my husband! :) Since I seldom have time to read I figured that during my convalescence I would "treat" myself, plus it gives me a good incentive to walk.
 
Tammy, boy you sure have had a year of it! People like you are my heroes - hope I can live up to the high standard you have set!
 
Diane
 
 
 
 
 
 

postal2
Veteran Member


Date Joined Jul 2003
Total Posts : 1106
   Posted 11/12/2006 2:43 PM (GMT -7)   
Jule, yes I did have reconstruction. Several times. I had expanders then implants, but if I had it to do over again, I would have the free flap that I talked to the Dr about. The only reason I did not, was I have lymphedema in my right arm and chest and both sides. I was afraid it would make it worse. Unfortunately I have gained quite a bit of weight and the implants stay the same.
I was not happy with the job the Dr here in Tri-cities did after doing it twice, so I went to Seattle to a Dr Richard Baxter. Wonderful Doctor. The Dr I talked to about doing the Free Flap is Dr Cooper in Spokane, he is very good also. Myself, I would go to Spokane or Seattle. If you want any phone numbers of either of these, let me know and I will e-mail them to you. Both excellent doctors!
Anyway, it is great to "meet" you, and take care! Let me know what you decide to do!
Hugs, Gail

PS, the Dr here that did my recon has retired, and there are others here. I just would still go out of town if it was me. Just not as big of town as Spokane and Seattle.


  It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had.
 
Elisabeth Kubler Ross

Post Edited (postal2) : 11/12/2006 2:46:48 PM (GMT-7)


babyseeester
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Date Joined Oct 2004
Total Posts : 826
   Posted 11/12/2006 4:39 PM (GMT -7)   

Jule,

I want to welcome you here as well.  We are the same age.  I was diagnosed with invasive ductal carcinoma 2 years ago.  I live in the Los Angeles area.  I'm glad you and Diane will be going through this at the same time.  I had a couple of people that were close in treatments and it really helps.  You have gotten some great advise already.  These ladies are gems and helped me tremendously.  Whenever you need us, we'll be here.


L & H,
Kathy


Brnadebt
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Date Joined Jul 2005
Total Posts : 688
   Posted 11/12/2006 9:25 PM (GMT -7)   
Jule

Iam from Wenatchee but live in The Seattle area now, I guess we are neighbors too. If you need help finding a Dr to do your surgery Seattle has lots of good ones. I have been blessed to have had all female Drs thru this journey. I was diagnosed just over a year ago and had a lumpectomy, chemo and radiation. Iam going to have a mast in december and reconstruction at the same time.

I just wanted to welcome you too, you will find great advice and best of all support here. I really believe I would have had a much harder time if not for the ladies here.

Keep us posted we care!

L&H
Bernadette
 
 


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 11/13/2006 6:42 AM (GMT -7)   
Diane and Jules, let me also offer a tidbit from experience...the fear of the unknown tends to be worse than anything else you'll go through. Often times, anyway, there are no absolutes here...take the attitude that you will get through this with flying colors and it will help! I worked full time and just took about 2-3 days off for chemo each time. We are all different, some have easier reactions and others worse, but there is no reason to think that things will be terrible. The only thing I did not do was go to malls or movies during the time when my counts were low, so if you start chemo soon, definitely plan around that. You may feel great, but it could be risky to expose yourself to that many germs.

LLBean has a great online system and if you get a credit card from them, there is no shipping fee and all monogramming is free. We opened an account before our wedding so that we could get monogrammed bags for all of the bridal party. It worked really well, all from the comfort of your computer room!

Lori


Vegas
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 11/13/2006 8:24 AM (GMT -7)   
Lori,
 
There are so many unanswered questions - and so much of it is just the little stuff like knowing not to go to a mall. I wish someone had a diary of how it all went on a day to day basis so I knew what to expect. Like how long are you in the hospital, how long is it before you can take a shower, how long will it be before you can blow dry and style your own hair, how much mobility do you have right after surgery, how long before I will be able to sleep on my side again (I hate sleeping on my back as I have trouble breathing), how long does it really take to heal, how long is it between surgeries if you decide to do reconstruction (assuming you don't have it started right at the first one), how long before you can go back to work, how long before you can work on a computer from home, if you have to have chemo can they do reconstruction at the same time, etc. And goodness knows what else that I haven't thought of that will be affected by this. Any good diaries out there just to get an idea from? I am thinking maybe I should keep one for other women, but if someone has already done a good one I would love to read it. Just the everyday nitty gritty stuff that you need to work around.

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 11/13/2006 8:47 AM (GMT -7)   
One thing I can say is that there is no one answer for all your questions. While some people breeze through chemo, others are very sick, and there may be no rhyme or reasons to it. Definitely make a list of your questions adn the nurses will answer some, as will we. They will tell you during chemo when to avoid crowded places and stuff you need to know. Just FYI, the pre-meds for chemo (worked great on nausea) are constipating, so plan for that...ask the RN about a stool softener or something. Eating dried apricots can help too. I had a sentinel node biopsy after lumpectomy and I was able to use my arm right away, but could not raise it very high. I think I held the dryer in that hand and used my other one to style, but actually forgot. I was allowed to shower right away, but I did not have drains (which you would with a mast). Also ask about stretching exercises for that mobility, and follow what they advise. It will help loosen things up. I slept on my side and found a small pillow to hold my arm off my breast worked well. I took just a few days off work, but that was for lumpectomy and SNB. When I had my first lumpectomy, I went back to work the next day.

As for books, have fun at Borders! There are a ton out there. I found Dr. Susan Love's Breast Book to be very informative...ans answered a lot of questions. The one thing was that she spoke in absolutes, " This will happen..." or " You will have this...." and it was not always true. I found myself asking tons of questions and it helped me prepare for the unknown.

And keep in mind too that some books may be a few years old, and things change. Things differ from city to city and doc to doc too.


Vegas
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 11/13/2006 9:28 AM (GMT -7)   
See, another handy tip - stool softener!
 
I told my husband he may have to take a few lessons with the blow dryer and flat iron to help me out the first couple of weeks! :) I am lucky I don't have to "go in" to work (I am a real estate agent but I have other agents working for me) so I can work from home on the computer, no problem as I want/need to.
 
What do you wear the first few days after surgery? Is it painful to have anything touching the breast site? I have never had surgery before and was only in the hospital long enough to deliver my kids, so all that stuff is totally new to me.

Vegas
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 11/13/2006 11:28 AM (GMT -7)   
I have another question - if you have a mastectomy and you cannot get the reconstruction started until later - do you wear some sort of prosthesis in the meantime? Or are there special padded bras you can use temporarily?
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