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Old 02-11-2008, 08:16 PM   #201
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Hi Sammie, I'm waving to you from Montana where it is 7 below zero, and yes I am in my jammies. Thinking good thoughts for you and sending hugs.

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Old 02-13-2008, 03:55 PM   #202
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Update on my brain.............

Although I haven't heard yet from my Neurologist eye DR, she sent a letter via e-mail to oncology. When I was there today I asked them to read the letter to me. It said that the initial findings, per the radiologist: the MRI has not changed since Feb. 2007.

Oncology said that the think I will have to undergo a spinal tap now to start looking at the spinal cord. The eye DR still needs to find and address whatever it is that is causing the problem in the sympathetic nerve. Oncology is working with neurology to find the problem. But right now I feel relieved.

We just got home and I had my first dose of the chemo Taxol. This was an all day event. I am hoping it goes better than the last regime. Mark brought his laptop and we watched a movie. Actually time went by very fast.

Oncology is going to have the genetic counselor call me and we will make an app't to see her. The test will tell if I carry the genetic BRCA marker for breast cancer. I am doing this for my daughters so they know what to tell their Drs. If I am positive, I will have another mastectomy as there is a great possibility of the cancer coming back in the other breast in the near future.

I am very relieved that my lungs are clear of tumors and the initial findings of the brain look good too. I will see her on Monday to find out what we do next.
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Old 02-13-2008, 04:02 PM   #203
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That is such good news about the MRI! I hope your reactions to this chemo are better for you too! {{{{{hugs}}}}}
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Old 02-13-2008, 05:35 PM   #204
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Sammie, I'm so pleased you have some better news. gentle hugs and I hope you're chemo reactions are easier this time around.
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Old 02-13-2008, 06:03 PM   #205
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You do sound better, that's good to "hear." Of course we're all sending you our "Good Vibrations" and "White Light"!
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Old 02-13-2008, 07:37 PM   #206
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That is some relieving news. I'm so happy for you. Big hugs to you to help you continue through your journey and keep up the good fight.

You truly are an inspiration to me. Thank you for all that you have shared here.
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Old 02-13-2008, 08:02 PM   #207
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Keeping you in my prayers and hoping that the mri showed that your brain is doing fine. I know all these tests are very scary but you have to remember that with out the tests you have no way to fight what you don't know is there. the tests are good. Take care of yourself try to rest and if possible with chemo try to move around so the chemo can get through your system just walking every hour or so would help. Not anything strenuous. Take care and feel the caring thoughts and prayers that come your way fro strength.
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Old 02-14-2008, 03:16 AM   #208
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Yay! I'm so glad to read your latest bit of news Sammie!!
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Old 02-15-2008, 05:38 PM   #209
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This is Mark, Sammie's husband. Sammie started the new chemo regime last Wed. to Taxol. I want to let you know that she is having really bad and strong side effects from the Taxol. She is having extreme bone and muscle pain that extends from her lower back all the way down to her toes. She is having extreme neuropathy pain in her hands and they are turning raw. She keeps lotion on them and wears gloves much of the time.

Her thrush is coming back strong also. Fortunately the nausea is not so bad with Taxol. The fatigue is fairly bad though and she is very weak. She talked to the oncology clinic today and they want her to increase her steroids 4 times higher than what she takes daily for lupus for the next 5 days and to use pain medicine as needed. She has been sleeping on and off today when the pain allows her to. Sammie knows how to handle pain as lupus has lived in her body for 25 years, but this pain is really severe.
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Old 02-15-2008, 05:43 PM   #210
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gentle hugs to sammie.

thanks for the update.
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Old 02-15-2008, 05:52 PM   #211
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Mark, thanks so much for updating us.

More gentle hugs for Sammie from me.
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Old 02-15-2008, 06:01 PM   #212
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Mark, please give Sammie girl my love.
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Old 02-15-2008, 07:17 PM   #213
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Oh, I am so sad to hear that Sammie is in so much pain. Sending more {{{very gentle}}} hugs and prayers your way.

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Old 02-15-2008, 09:42 PM   #214
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Mark, thank you for the update. I am sorry to hear that this is so hard for Sammie and you. I will be keeping you and Sammie in my thoughts, and I hope her pain stops soon.

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Old 02-15-2008, 11:32 PM   #215
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Quote:
Originally Posted by Samantha View Post
This is Mark, Sammie's husband. Sammie started the new chemo regime last Wed. to Taxol. I want to let you know that she is having really bad and strong side effects from the Taxol. She is having extreme bone and muscle pain that extends from her lower back all the way down to her toes. She is having extreme neuropathy pain in her hands and they are turning raw. She keeps lotion on them and wears gloves much of the time.

Her thrush is coming back strong also. Fortunately the nausea is not so bad with Taxol. The fatigue is fairly bad though and she is very weak. She talked to the oncology clinic today and they want her to increase her steroids 4 times higher than what she takes daily for lupus for the next 5 days and to use pain medicine as needed. She has been sleeping on and off today when the pain allows her to. Sammie knows how to handle pain as lupus has lived in her body for 25 years, but this pain is really severe.
Providing her with a pain doctor is the standard of care. Are her oncologists getting her that standard of care? Chemo pain is horrible! She shouldn't be suffering at all. I would contact your onc ASAP (like tonight) and tell him what's going on. They may be able to send out a home health nurse to start an IV drip of pain meds. That would work faster than oral meds. And, the steroids will stop inflamation, but I don't think this pain is from inflammation. I'm shocked that her oncologist would up her steroids doing chemo, too. Poor Sammie. Is there anything we can do?
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Old 02-16-2008, 06:53 AM   #216
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I'm so sorry to hear you're having so much pain! My doc had me taking L-Glutamine powder before treatments to help the nerve pain and also help my stomach. With today's technology I can't believe they are allowing you to experience that kind of pain. My docs also told me if the neuropathy got that bad they would quit or reduce the dosage because it can be permanent in some cases. Don't be afraid to question what is happening.

Good news about the brain though! Hang in there, girlfriend.
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Old 02-16-2008, 09:00 AM   #217
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I'd like to send Sammie a card, can someone PM me her address?
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Old 02-16-2008, 12:08 PM   #218
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Sammie (and Mark), I hope they can do something more about the pain! I feel so bad for you. *hugs*
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Old 02-16-2008, 12:51 PM   #219
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Sammie I just don't know what to say to you right now. I feel horrible that you have to deal with such levels of pain. I hope that your doctors can devise a plan that is more suited to deal with your needs.

I hope that the hugs and warm vibes from all the ladies here give you a small bit of comfort and peace of mind. And I hope that you know that your strength is helping us as well.

Gentle quiet hugs to you and your family. You are in my thoughts daily.
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Old 02-16-2008, 01:12 PM   #220
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And Mark, I don't even know what you must be going through. It is horrible enough for us, reading this stuff; I can't imagine what it must be like for you to be there actually witnessing this pain. Thank you so much for keeping us updated!
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Old 02-16-2008, 02:06 PM   #221
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Mark,
thanks for the update and I am sending good thoughts your way.....I know how hard it is to watch a loved one go through chemo and my mom has added sammie to thier church prayer list ...........you guys are in my thoughts.
hugs from germany
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Old 02-17-2008, 06:27 AM   #222
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Mark, thank you so much for the update. Very warm hugs to you and Sammie and I very much hope that both of you are doing ok.

Your keeping us updated means the world, and please know how very much we're all thinking of both of you.
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Old 02-22-2008, 04:20 PM   #223
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I survived the first round of Taxol. Holy carp, it was painful. Most of the Taxol pain is gone. I have never had such pain in my bones and muscles in my life. Oncology said that the pain clinic should get involved with the pain that I am having with Taxol. I have been going to the pain clinic for a few years and I am glad that they are working together now. I went to the pain clinic on Wed. and I will start some strong pain meds 2 days before the Taxol infusion and take the strong stuff for about 7 days after. I take a small dose every day now but it will increase a whole bunch. Then I will wean off some and do the same over again if it works.

If the meds don’t control the pain, the pain clinic is going to change them and do all they can to control it. According to oncology, the pain I had is not unusual to this type of chemo because I already have health issues that play right into the side effects of Taxol. Many breeze through and many have severe pain. I am the latter. Part of my lupus pain is always in the muscles and joints…and my heart. But they are watching that.

I have lost my sense of taste. Everything tastes kind of like a metal. Even chocolate. I can taste grape though. So I am eating a lot of grape popsicles and grape jelly on bread.
My DD and 4 y/o GD are coming on Tuesday and I have my next dose of chemo on Wed. So they will be here for the “pain” part. That may take my mind off of it and the time will maybe go faster….cause I never want them to go back home.

Thanks again for the beautiful cards and thanks Rainsong for the phone call. It was so nice to talk to you. I can’t even begin to tell you how much you all have meant to me.

Hugs to all of you.

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Old 02-22-2008, 04:58 PM   #224
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Thanks for the update, Sammie.

Your lose of taste reminds me of a goofy story. My mom used to smoke, but quit, but went through a spell where she said she felt she couldn't taste anything. I was a teenager, and she'd pull out braunschwieger (sp?) - a mushy nasty smelling meat paste - and put it on sandwiches, I'd have to leave the room; she'd make Kielbasi and stink up the whole house... I was glad when she got over it!

Grape doesn't sound so bad.

Oh well. Silly memories. Hugs to you and I hope you can manage the pain!!
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Old 02-22-2008, 07:52 PM   #225
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Sammie it's nice to hear a glimmer of hope in your post. And I too hope that your DD and GD can help ease the pain you may experience the second time around.

As always you are in my thoughts daily and I send you gentle warm hugs every night.
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Old 02-23-2008, 06:13 AM   #226
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I'm glad to hear the pain clinic is going to do something about the pain! I hope you have a good time with your daughter and granddaughter!
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Old 02-23-2008, 07:47 AM   #227
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Oh, and I forgot to post something last night. My neuro ophthalmologist is treating my Horner’s Syndrome. So far she has done an MRI on my brain and lungs to rule out mets from the breast cancer to those areas that could be affecting the Sympathetic Nerve. It has also given me great peace of mind that the breast cancer hasn’t spread there.

I should add that she had breast cancer herself about 9 years ago. The last test she ordered forme was what I thought was just a PET of the neck to rule out the last part of the nerve. She could have done another MRI. But she ordered breast cancer staging 1st and then my neck 2nd. When the PET tech called she said that they are doing a head to thigh scan for BC staging. WOW. She has ordered every test that I think a breast cancer patient should have but doesn't usually get.

For me, this is a body scan that my oncology DR. doesn’t do one unless you have a “pain” or symptom that would have him order it or if one is stage IV. After I hung up the phone I started thinking that she is doing this because she knows that I won’t get one any other way and she has the DX (Horner’s) to ask for it. Because she has been through this, she is going to give me the kind of peace of mind that I was worried about not getting. If the body scan is clean, then I can finish chemo and just go on with my life and pay attention to new symptoms, have regular check ups and feel like everything was done to check for mets- at least for this period of time.

I am meeting with a new surgeon in a few weeks to talk about a second mastectomy, after I am through with chemo and feeling well again, as I also found out I have Triple negative breast cancer (TNBC). Here I thought having negatives was a good thing. NOT. I have a much greater chance of recurrence in the other breast and also mets to organs in my body. I think the neuro ophthalmologist is taking this very seriously. She said she would back me 100% on having the bilateral surgery. I wish I knew what her history really was/is. We talk a little about her, but Iwait for her to open up the topic of herself before I say anything.

Anyway, I forgot this last night and it seems like my posts get so long. I am actually a “quiet” person if you were to meet me. I have no idea what makes me a motor mouth here.
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Old 02-23-2008, 10:36 AM   #228
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Oh, I am so relieved to hear your neuro opthamologist is soooo thorough and totally on the ball!

*grin* I bet you are a motor mouth here 'cause you know we all care, and we're all interested, and we're all hanging on your every word!
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Old 02-23-2008, 11:00 AM   #229
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I am so glad that there is a plan in place to hopefully make this next round of Taxol easier!
And wonderful to hear that your neuro opthal. dr. is being so thorough! Hooray for a compassionate dr!

{{{hugs}}} and prayers!

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Old 02-23-2008, 11:02 AM   #230
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Sammie - I have been scattered lately - so haven't read here as regularly as I would like... it was great to hear the brain scan came back as a positive result, I'm sorry you had that limbo period of worry. The "not-knowing" is the worst.

I haven't had much card making time the past few years, but I'd love to make and send one to you this weekend...
Can someone PM me an address?
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Old 02-23-2008, 11:41 AM   #231
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Hello, I haven't posted on SCS in a really long time, but your story brought it all home for me. We are sisters in disease because I Scleroderma, which is in the lupus family, and I am having a stem cell transplant. What we are going through is like comparing apples to oranges. But I can tell you have strength. I feel humbled by your strength. You will overcome this and it will just be a distant memory - hopefully, even the pain. Look for that day, imagine the news that everything is done and there is no cancer and then start planning a reward, like a trip or shopping with a higher budget or something you've always dreamed about but never did, because it might have been "impractical".

I just wanted to say "hi sister in disease" and you rock!!!!

Soft, warm, gentle hugs,
Denelle, transplanted to Chicago for a transplant
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Old 02-23-2008, 12:38 PM   #232
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Oh, I am so relieved to hear your neuro opthamologist is soooo thorough and totally on the ball!

*grin* I bet you are a motor mouth here 'cause you know we all care, and we're all interested, and we're all hanging on your every word!
Ditto this! And you know we are hungry for updates because all of us want so much for you to be well!
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Old 02-23-2008, 06:40 PM   #233
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Thinking of you and hoping for the best news, best outcomes, and least pain possible. Blessings....
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Old 02-26-2008, 05:17 AM   #234
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Sammie,

Thank you so much for keeping us updated. I hope you're feeling better and having a great visit with your daughter and granddaughter.

Just wanted to send (((hugs))), relief at the good outcome from all the tests, and lots of warm thoughts and prayers to you.
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Old 02-26-2008, 10:56 AM   #235
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Just wanted to let you know you're not alone. I'll put you on my prayer list also. I have been through breast cancer, chemo and surgeries twice. The last time I had a double mastectomy with implants. My chest felt like it was on fire. I thought it would never go away, but it did. I hope your results are good. Just remember we're all pulling for you and that God is able.
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Old 03-01-2008, 07:54 PM   #236
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Sammie, hoping no news is good news. Aren't you enjoying your DD and GD's visit?

Just thinking of you and wanted to let you know. Hugs.
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Old 03-02-2008, 02:12 PM   #237
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Originally Posted by sewsplendidstamper View Post
Sammie, hoping no news is good news. Aren't you enjoying your DD and GD's visit?

Just thinking of you and wanted to let you know. Hugs.
Thanks.

I had a great time with my DD and my GD. My GD didn’t care if I was bald. She liked me to put on a hat and take it off quickly saying “Ta Da”. Then she would laugh. The visit was better than taking pain meds. I was in a ton of pain and I just tried to ignore it if I could.

I have 2 more chemo treatments to go and I hope that will end all of this. I never thought for a second that the pain could be this great.

Karen, I am thanking you publically. She sent me some goodies and then put in a gift bag for my GD. You should have seen her little eyes brighten up. Well, mine too. She made you a thank you card today with the help of her mother and already stuck it in our mailbox on the way to the airport. Thank you for everything you have done for me and now for my family. Also, thanks Jane for the beautiful card and comforting words. You are great with your “words”. Thank you.

Mark is having a hard time right now and trying to stay out of the hospital. 3 nights ago it was very scary in knowing that he might have a bowel obstruction, but not knowing if it was a partial one or one that I should call 911. He was in a tremendous amount of pain and as one might know, it was a slippery and snowy that night. His pain meds worked a little and then he did have air moving through by the next day (in our home that is a good thing). He is still on clear liquids and will remain so until the pain has totally gone. I am really tired of worrying. I worry more about him than me- for good reason.

We look at each other and laugh that we are so pathetic. If it is not him, it is me with problems. I have one more day of intense pain and then it will start to ease some tomorrow. On Wed. I am having a PET scan from the head down to the thighs. My eye neuro ordered it for breast cancer staging for the Horner’s Syndrome. If nothing shows up in my neck, we are going to just “watch” the nerve and forget about it being a met’ from the BC. It actually will be a relief if the whole scan is normal. I won’t have to worry about mets' right now. And if it is clear, I am NOT going to have another mastectomy – even though I am Triple Negative. I will just get the expander taken out with implant put it probably in late April or early May and have symmetry surgery on the good side. Then I am done !!!!!!

Hugs and love to all of you.
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Old 03-02-2008, 02:52 PM   #238
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Sammie you sound much cheerier than some previous posts. I'm so happy that you had a wonderful visit with the girls. And glad too that you can step outside the situation and laugh. It is a tremendous thing you, your husband, and your family is going through. To be able to lighten the mood is amazing. You are amazing.

I hope the end really is in sight and the your scan shows nothing. Hugs to you and the family. Thanks for keeping us updated and sharing your story.
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Old 03-02-2008, 05:36 PM   #239
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Ditto from me too. I hope with all my heart that the scan comes back clear, and that Mark feels better too.

Prayers and hugs to both of you, and thank you for keeping us all posted.

I know you're on a rough journey right now, but it means the world that you've chosen to take us all with you.
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Old 03-03-2008, 01:52 PM   #240
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Me too, me tooo!!!!!!!! Please keep us posted!
Oh my gosh Kelly. I sent you a PM, but thank you so very much for the surprise gift box. I am so over whelmed by the kindness from women on SCS that I don't know how to express my gratitude. The PJ's fit perfectly and I am going to wear them ALL day tomorrow.

Love and HUGS to you.
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