August 2010...anyone starting chemo besides me?!
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"roids" anyone want to share their personal remedy. I'm trying the witch hazel. It is gross.
This last TCH kicked me bad. almost one day until 2 weeks out and I feel whiney and tired. It is really cold at work. I am used to our mild NC winters and it has been in the 20's lately. My principal stopped by and told me not to do any outside duties.
Lago I think I did read a while back that Elizabeth Edwards was so distraught over her son's death and with the campaign cranking up she did not take care of her needs. Very sad.
Lizzy since you mentioned the Zhara Baker killing in Hickory. That is a little less that 2 hours from here. I think a lot about the fact that somewhere a family would have gladly taken that beautiful little girl.. Todays paper said both the cousins had passed polygraphs, so step mom may be blowing smoke. That police department has been meticulous in the handling of this and I don't believe any indictments have been handed down. When she was found the chief of police cried.
ALL I am headed to the beach for the weekend with DH. This summer he had taken a week off for vacation. That was the week I was diagnosed so with the drs and me bawling all the time we didn't go anywhere. This will be a short trip, but outlets malls will be involved.
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On bottoms and bums and such- I found really cold vaseline (from the fridge) helped! That was doctor recommended.:) I also tried really hard not to poop. Ha! That didn't work out so well.
Trip booked- a real deal popped up and three great girlfriends and I are going to Domincan Republic at the beginning of January. I am so excited I can barely sleep. I'm sure I'll look like a total freak- burnt boob, bald, hobbling due to sore feet joints, but I'll be there!!! LibraryLil- I hope you have an awesome time on your vay-cay (that's what all the cool kids call it, or so says my 18 yr old niece....:)
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well, it's been an interesting night!~
Called at 5 for the results - the doctor I saw had left for the day but the receptionist said my results were there. Great. Of course she can't tell me...........So I take a xanax because now I've worked myself into a freak out.
So 7:30 the phone rings -it's the head nurse for MY doctor. She sees that I called and complained of shoulder pain. I tell her the story and she is surprised I saw the other doctor and that he ordered x-rays. I tell her I'm waiting for the results and she says "Well, I can get those for you - my computer's not on but let me see and I'll call you back". An HOUR later she calls (longest hour ever!) and the results are fine!
Can I just say the nurses there are angels? She totally didn't have to call at 7:30 at night, after hours when the office had been closed since 6. I think she and my doctor were out yesterday and today at some sort of seminar or something. anyway.....WHOOT!! So now I finally eat dinner since I was such a wreck.
Anyhow, think I'm going to go to bed soon but make some popcorn first..........
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WONDERFUL NEWS CAL!! I think we'll all sleep a little easier!:)
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Calamity, great news!
My hands are still bothering me, the numbness goes to itchy then right on to pain when I use them on the computer Feet haven't changed at all, numb soles.
I am feeling better though. I can walk up the hall to the bathroom without feeling like I am going to take a hear into the toilet. It is still hard to fathom that all this breathlessness is from Chemo exhaustion. Not a SE I expected at all.
My nose has stopped running! Woo, Hoo, It ran everyday I was on chemo and beyond. Nice to not have to worry about dripping on my beautiful granddaughter!
My Mugga was a 67 I think. The RN said that anything above 50 is good.
I have been thinking about the brachiath...... (something) radiation that is new. It is internal and is put in under a local and you go two times a day for 5 days and the thingy is removed on day 5. So I was poking around and saw a paper that mentioned it is quickly becoming more widely used because of its convenience, however its efficacy hasn't been proved. This was an abstract so I didn't get to read the entire paper. It did give me serious pause for thought. I really do not want a recurrence and if 5 weeks plus a couple more days is proven I suppose I will go with that. I will keep looking around though.
Hugs everyone
Ginger
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Cal - Fabulous news! I have been praying and deep down knowing that all would be good. Hope the popcorn was yummy!
Sweeney - So glad that you booked your trip....enjoy the get away!
Ginger - Hard to decide what to do when there is always so much new technology and new treatments (we are so lucky they keep finding new stuff). It sure does make it tough, you take a harder road know for something proven, and then find out 3 or 5 years from now that the easier method would have worked just as well. At least y at this rate, your granddaughter will never have these worries or decisions!
libraylil - I know what you mean about the TCH butt kicking. Today is a week out, starting to feel better and crazy to think I don;t have to start the, "I have two more good weekends left" countdown!
Have a great day all!
Michelle
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Sweeney: That trips sounds great, just what you need after the last couple of months!! Enjoy!
Calam: Great news!!
Mommimichelle: That is the best part about finishing...knowing that when you start to feel better, you are NEVER going to feel that horrible again!
I have 7 more rads sessions left, five of which are boosts (directly to the tumor area, which means the rest of my breast will begin to get relief after two more). My whole left side from the breast up, midline of my chest and over to the under arm is red. Some parts are purple, others brown. Looks lovely!!! But, still no peeling or blistering, and only a little pain, so they tell me I am doing good. I can't wait for this all to be over!
So now I would like to ask everyone a question to gauge whether or not I am nuts. Before BC, I never went to the doctor. If I had a problem or a symptom, I would just ride it out and see if it went away. And it always did. Now, every time I get an ache or a pain, my first instinct is immediate panic. Then I have to psyche myself into calming down, and believing that it is nothing to worry about. It is like a little battle going on inside my head every time I get an ache or a pain. It is driving me nuts, I feel like such a wimp, but I am afraid that if I ignore everything like I used to, something might be serious and it will only get worse. I guess this is because I never got a mammo, although it was prescribed for me several times, and they tell me that my cancer had probably been growing for years So, deep down, I can't get away from the feeling that all this misery from chemo, rads, and such; I caused myself through years of neglect. I feel like I have that little devil and angel on opposite shoulders debating whether my symptoms are serious or not! Does anyone else feel like this? Has anyone gotten advice on how to handle medical symptoms and such in the future?
Thanks for any input,
Debbi
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Good morning chemosabes and radicals!
I have been snoozing off my chemo.
CALAMTYKEL! I am SOO happy your results were fine! GREAT NEWS! Thanks also for helping me keep the bleeding business in perspective! Again, I am so glad about your news. Good for you. I was sending you positive vibes all day yesterday but was so knocked out after going back to Yale for Neulasta and doing a little shopping I fell asleep at 5:30 last night and woke at 11! It felt good but, in any case, I was very happy to read your news today. Such good news. Have a LOVELY day...but don't run!
Omaz: good for you with the walking trail and for *pushing* yourself to finish. I am very, very proud of you! It is wonderful that you are getting a mile done just 2 weeks past treatment! You should pat yourself on the back, woman!
Iowa: glad the diuretic helped. I know I have some lacix around here but I am not going to bother until chemo is over. Question: when you speak of markers and Elizabeth Edwards, exactly what does "marker" mean? Either chemo brain has evicted it from the short-term file in my brain or I was never clear on it! Just wondering...is this the ER, PR, HER results? Is that what markers are? Just wondering.
Lady: well put on Elizabeth Edwards. She really did sacrifice a lot and she seemed to be a lovely person. I was watching a "Nightline" piece on her last night and she really devoted a lot of time and effort to advancing research on bc. There was more that I wanted to share about that story but it has left my mind! Also, I will try the Afrin. I am going to CVS shortly.
Rachel: I look forward to my liver and kidney bloodwork results and am always happy to see they are fine. I am glad, you too, are doing well with that. Walking twice per day is great. It does increase energy. I am still riding that recumbent bike but not as much as I was when I first started chemo. Only 1 tx to go and I am done so am looking very forward to getting back to normal workouts over the Jan to Feb stretch. I just built my home gym around Feb-April this year and the bc drama started in March. I really have not had much chance to use it. Here's to January!
Zenith: That is wonderful you have come to love your little dog! That is such good news! They are such good company. We are getting snow here as well. I am glad your DH keeps shovels out a path for the dog. Good on the union dues, bad on the life insurance! I can only imagine what premiums would be like now if you had to get a NEW policy! I don't even think they will talk to us anymore!
Libraylil: Maybe it is not the last tx but the weather that is knocking you out?! A friend just moved from CT to TN and is wildly upset she has gotten MORE SNOW than we have in CT! About Zahra, that story has rented space in my head. I could go on line and peruse the local papers but primarily I was exposed, and did get exposed to the story, through Nancy Grace. You are absolutely correct in how many people would have adopted her. I am still very suspicious as to what precipitated that man in the UK to, seemingly arbitrarily, send her wicked stepmother $10K. There is something rotten in the cotton with that. So now that the other 2 passed the polygraph we are back to her father and stepwitch. That story just breaks my heart.
On the bleeding, I have no remedies. I really don't know what to do.
I hope you have a nice weekend of shopping at the shore. Relax and enjoy!
Sweeney: HAPPY TRAILS! I hope you enjoy the DR. A friend goes every few years. He loves it. I have never been. You got a good deal and I think it will be very good for you so I wish you fun times and some nice, warm weather to enjoy! Don't forget, us bc girls need that vitamin D!
Ginger: great on the nose stopping bleeding. I agree with you on the breathlessness and it being 100% a chemo side effect. It makes me nervous as well. Your MUGA results were great, btw. That is very good. Continue to do research on anything new, and although efficacy is not yet proven, surely they are on to something so why not try?!
Hopefully your numbness abates soon. Positive vibes to you on that.Sptmm: Someone on NPR was talking about the year following the end of chemo and rads and how it is easy to be very concerned with every ache and pain. We can easily get carried away and that is natural. Don't forget, however, cancer does not hurt. It does not show any outward signs generally and this is why it also has the dubious title of "the silent killer." For this reason, we have to stay on our follow-ups but that is about it. There is not much more we can do. I, too, feel I am going to but unusually concerned with any odd stuff but I think as the days go by, we will take it more in stride. I do know what you mean, however. I have a very good, long-term relationship with my GP and I love him. He is a great doctor with a huge practice filled with patients who adore him. I am blessed to have this and I think he will help me keep things in perspective going forward. I hope we all can find talented, caring doctors like my GP to keep us from spiraling going forward. In the end, Deb, we are all in this together, having the same concerns and worried about over-responding to the "little stuff." We will get through it!
Adey: good luck tomorrow. Hope all goes well and you don't have too many SE. I will look forward to your update! BTW, I got gross A yesterday!
Well, I have a few more things to do before my luscious TAC takes me down! Good day to all-
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Are any of you guys who are done with chemo having surgery before rads? I'm having my implants redone on 12/20, so a cosmetic thing that should be outpatient, but then a six week wait before rads.
Just checking to see if anyone is sharing that journey. Ugh.....
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Any chance anyone wants to hold my feet to the fire for exercising? I need a motivator! I will gladly trade job and yell online at anyone else who needs a motivator.:) I'm going downstairs right now to put in some time on the bike. I don't want to look like a bald whale on the beach. I need help sisters!! And I'm totally willing to help anyone else who might need it too.
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Zachsmom: I am having surgery before rads. My PS and I discussed this. Rads can have such a deletirious, albeit normally temporary, affect on the skin he said he has to get this work done before rads. I am not trying to put aesthetics before health and, although I have not seen the rad dr. yet, I am sort of leaning toward waiting until after the PS stuff is done. Plus, one of my TEs failed so that has to be replaced, then fills and then final implants probably in April or May. I will be putting rads off until then...or so I think. After I meet with the rads people I will tell you what they say. I am sure they are going to want rads before PS but, to be honest, I am not looking forward to another 2 months of fatigue. I am hoping they say the 3 months in between are going to be ok but somehow I am thinking they might have a problem with this. Again, I will let you know but my plan is to put it off.
Sweeney: never mind what you will look like on the beach! Just focus on how you will feel better after exercising. Just do it for 10 or 20 minutes and watch tv. That is what I do. I have the recumbent bike in my office and I watch CNBC while I ride! Or basketball or blah blah! Just listen to some music or watch tv. It will fly by but don't force yourself to do too much or ride hard. Just take it easy. Don't forget, before getting on the bike you were sitting so even a modicum of effort will have a good result
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Thanks Lizzy- good advice. My doc told me to do 2 rounds of 10 min each day. I've added a little tiny bit of 3lbs free weight lifts and some bum exercises. And you do feel better. I just did my ten min and I feel great.
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Cal: So glad you got good results. My onc's nurse called this a.m. to ask me if my nosebleeds were better. It really helps to know they care and are checking up on us. And, yes, they are gone, so Lizzy, the spray routine for 3 days worked on mine.
Debbie/sptmm: Don't blame yourself for not going for the mammos. I go every year, and they told me also that mine had been growing for years. I have/had dense breasts and the cancer had to get big enough for them to see it. So, you wouldn't necessarily have found it any earlier. I'm not saying we should put off our tests; but the tests aren't infallible. And blame is the last thing any of us need at this time.
Zachsmom: I'll be switching my TEs for implants in January, don't have a date yet. But I don't have to do rads. "They" say the switch surgery is not that big a deal. I'll probably have my port removed at the same time. The onc. said he wants to be the guiding doc on deciding on when/what surgery to do - to make sure my body is ready to handle it.
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Sweeney - If you yell at me not to eat sweets (I need to lose about 20 pounds of FAT) I will yell at you to exercise! Well, I'm not much of a yeller, but I could use BOLD TYPE, does that seem like yelling??0
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Wow, this thread moves quickly.
ZENITH4289 - I didn't have a full hysterectomy but I did have my tubes and ovaries removed laparoscopically this past Tuesday. My oncologist said it was okay to have the surgery 2 weeks after chemo. I had 2 surgeons doing different procedures and it was 3 weeks post chemo before they could coordinate their schedules. I'm just 2 days out and except for being really sore when going from laying to sitting, I feel pretty good.SWEENEY and SPTMM62 - Thank you for posting honestly your experience with rads. I'm scheduled for my simulation next week and then to actually start a week later. Everyone keeps telling me it's going to be so easy. After reading your posts, I know not to feel bad if I don't think it's as easy as everyone says it will be! Glad that your done or almost done though. Now let the healing begin!
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Lizzy-- I'll be with you on the TAC #5 train tomorrow. I'm having a glass of champagne right now to celebrate the end of my golden times for awhile!
Try not to poop? Yikes! It's a wonderful thing. (c: My worst SEs are my eyes; going blind and drip, drip, dripping. And all of the mucusy bits, nose, mouth (chemo mouth taste), vagina, stomach, intestines, colon, and the last exit. I buy rose petal witch hazel with aloe vera and put it in a spray bottle for a spritz the exit as needed, soothing. And of course make sure the poop will be soft, stool softener, laxative, water, prunes, whatever. There's also the good ole sitz bath or soaking in a tub with Epsom salts or sea salt. Good luck.
Congratulations to all you walkers and exercisers. That is my next goal.
Also congratulations to everyone receiving good news!
Right now I plan on doing Rads (if needed) after reconstruction too. I've only seen one rad onc and need to do a lot more research.
Have a great weekend all.
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Well, it's been a day of running for me!
The good news is the nutritionist, who is also a chiropractor felt and looked at my shoulder and said it's muscular. I need adjustments but frankly I cannot afford that right now! (he can't do adjustments at his nutrition practice there for legal reasons-- long story.) So I'm just resting it and hoping it returns to normal soon.Anyway, so the day was spent at four doctor's appointments. Three nutrition -one for me and one for each of the two girls, and one regular doctor app't for my 14 yr old who woke up with a sore throat and ear ache. Ran to the supermarket in between and then home and started a big pot of chicken soup and it was time to turn around and go back out again. It's been one crazy day!!
while at the nutritionist, I got an ionizing foot bath. It was very interesting. It pulls out toxins from the body through the feet. The water actually changes color and texture based on the toxins! Really interesting - wish I had one for here at home!
Hoping everyone is having a good one - and planning on not going anywhere tomorrow but the post office with my orders!
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Debbi -- I totally understand. I went through it with my shoulder this week! It's insane, isn't it - the mind games you play with yourself.
I don't have much advice except to say that the mind is an amazing thing when it comes to imaginary pain. For instance - when I first got this shoulder muscle pain, it wrapped around the side into the numb area. I swear I felt like I was swelling. I thought about lymphedema so much my arm ached all day-- seriously. I was sure I had it.
I went to the doctor who checked it, ran the rib scans and felt my whole area and arm and declared me fine. Guess whose arm hasn't so much as twinged since then?
I'm not saying "all pain is in the mind" but it's absolutely frightening to me that I can actually think about pain and have it appear! =:O
I guess we just try to do the best we can - I'm considering for the immediate future some kind of anti-depressants or something, so that I can try to think a little clearer and not be obsessed and worried about every twinge.
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Debbi stop blaming yourself. I had reg mammograms and my ILC is about the same size as yours. The dr tells me it is very hard to detect. The radiology nurse showed the me unpleasantness on my mammogram and it looked like a spider web or octopus. Of course I wonder if it was there last year and just not seen.
ALL thanks for all of your candid tips on dealing with 'roids. It takes real friends to lay this kind of stuff on the line. Beth
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Debbie I only skipped 1 mammogram in 2007. I had very dense A/small B cup breasts and it still had to be 5.5cm for them to spot it… actually I was having discharge so they were looking for it. I was told it was fast growing and I had this for 4 years. 4 years ago I did have an US but it was too small to spot back then. If only the would let us dense gals get an MRI once in a while maybe we could have caught this earlier.0
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Lizzy wrote: Question: when you speak of markers and Elizabeth Edwards, exactly what does "marker" mean? Either chemo brain has evicted it from the short-term file in my brain or I was never clear on it! Just wondering...is this the ER, PR, HER results? Is that what markers are?
Lizzy - When I think of markers it is exactly that , the ER, PR and Her2 results. The markers can make a difference in therapy. For example if someone is Estrogen Receptor negative presumably giving tamoxifen or an AI would not help them. Similary herceptin is gonna work for women who are Her2 positive but not those who are Her2 negative. I am not sure how the 'degree' of positivity plays into this, for example someone who is 30% ER+ vs. someone who is 90% ER+, maybe someone else could talk about that. There are some studies out there that combine the markers in different ways and estimate risk of recurrence for the different groups. Then there are the molecular marker tests like oncotypeDX and others. They provide more detail. I didn't have one so don't know too much about it.
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omaz - yes, and the number of LN's involved also. I'm curious about that. The whole thing is just so sad.
conversely, I was reading about Olivia Newton John in the doctor's office yesterday. She had BC in 1992, did chemo and has been okay since then. She lives a very holistic lifestyle. I had to chuckle though when the article says "she exercises daily, which helps to maintain her youthful appearance..." The photo on the front looked like a 35 year old, not a 61 year old! Um...thinkin' it wasn't "just" exercise that did that..... ;D
Anyway,she's founded some kind of cancer center that treats cancer both traditionally and holistically for people who can't afford the holistic route, so the article was very interesting.
It's 13 degrees here in NJ today. Have three orders to get out - one of them is big. Kids have to bang out some schoolwork then not sure what we're going to do. Need to get wrapping presents!
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After 3rd taxotere, feeling the worst I've felt. No taste, I think I've got some thrush. I'm seeing spots, having eye problems. My nails are sore and my fingertips tingly. Constipated. I slept 14 hours yesterday and am about to go lie down again. Dizzy. I'm hungry, but nothing tastes good. I've had some applesauce and a little cream cheese/bagel this morning, trying to get a few carbs and protein in. Yuk ... DH is out doing shopping for Dirty Santa for a church Christmas party tomorrow night. I hope I feel up to going. Just wanted to bitch and share what's up with me today. This too shall pass, I'm sure.
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Good morning chemosabes and radicals-
Wherria: where have you gone? I am thinking of you.
Texas: I sure hope you are not blaming your kitten for any moving complications and that you are getting settled in!!!! Looking forward to hearing from you again.
Omaz: thanks for the info on the markers. So the oncatype dx test shows percentages of ER, PR and HER involvement? I have not had that test. Surely it is something to consider. I hope you are having a good day marching around your back yard in the AZ warmth!
Ladyinbama: you have a friend in CT today
I feel exactly the same way. This was #5 on TAC and the tastes, dizziness, eye problems, sore nails and constipation are my crosses as well today. I am so glad just one more. I can't believe how it saps my energy and plays with my breathing. Going up the stairs is a big chore. January can't come fast enough! May each day get better. Oh yeah....dry mouth...another favorite! Constantly drinking water and still dry....Calamtykel: Olivia Newton John has done very well. I do honestly think Elizabeth Edwards loss of her son some 14 years ago really did her in. She even spoke of wanting to be reunited with him upon death. The stress of the political run of her husband and his philandering, albeit stressful and surely did not help, were not tantamount to her failing under the aegis of this catastrophic health event. Her heart seemed to go with her son when he died. In the end, I really think each and every one of us has to choose our battles and try to keep stress as minimal as possible. This is key to a holistic approach to dealing with the aftermath of this dx. It can be done; we all, present company certainly included (!), have to be a little bit smarter about how thin we spread ourselves and what battles we take on. It is one small step!
Well, I have to go back to the basement to get some stuff out of the dryer! If you all don't hear from me I probably curled up in the laundry and took a nap after the descent down the stairs knocks me out!
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LadyinBama I'm on my 4th THC (yes taxoterible too). I too have the sore nails. Constipation was alleviated with Metamucil, dried apricots, salad lunch, lots of water, probiotic all taken yesterday. Got the relief this morning. Tongue is starting to feel funny so I know taste buds will change by Sunday the latest. My eye lids still flicker and yesterday I didn't drive because my eye site seemed blurry/funky for distance. I don't wear glasses for distance.
I asked my onc about the sore nails. She said it is a sign that the may fall off… not absolutely but might. Just thought I'd warn you. So far I haven't lost any nails but it is annoying. 5 of them are giving me issues, both thumbs, both index fingers and one middle finger. I'm trying to ice them occasionally but I'm not sure if that will save the nails from falling off.
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Lago - For the nails I don't know if the ice helps afterwards. I have only read that ice DURING the infusions decreased blood flow to the nails and reduces the exposure to the taxotere. Start cooling 15min before infusion, continue during infusion, follow with 15min more.0
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calamtykel Glad to hear your shoulder turned out to be fine. It is interesting how our minds can play such tricks on our bodies!
Lizzy My onc told me that the oncotypeDX test gives an idea of how much you will benefit from chemo but is only done if you are node-negative. So probably many of us have not had it. The percentages of ER/PR expression are done on your biopsy and also on your tumor after surgery. That is part of the standard pathology report. So if you have any of your pathology reports from your biopsy or surgery there should be a section where it reports on the ER, PR, and HER2 status and next to the ER and PR there will be a percentage. I am also not sure what sort of research is available on the "degree" of positivity on ER/PR and responses to Tamoxifen or AIs. I am 99% ER positive and 96% PR positive so I haven't thought too much about what a lower percentage might mean.
It has been cold here all week (cold by Florida standards, not Northeastern standards!) and super dry so my whole body just feels dried out. My nose is especially dry and uncomfortable. It has now been one week since my first Abraxane and I have been feeling good. Hopefully the next three will go just as easily. I'm sending out good thoughts to everyone in the post-chemo "sludge" as Lizzy so eloquently calls it!
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Greetings from a "rad"ical! I just wanted to give everyone some hope out there that it does get better.
I just finished my first week of rads. I am now close to 4 weeks out from my last TCH. And things are improving! The twitching has decreased a LOT. My eyes are still watering a little bit, but there has been a BIG improvement. My energy is returning. I walked for 40 minutes yesterday and still was able to do a 2-hour Christmas caroling gig. That is HUGE! My nails are still sore and red, but they don't seem anywhere near falling off, so I'm hopeful that they will just grow out. My taste is completely back - all my favorite foods taste really good. No real hair yet, but I do have a bunch of peach fuzz on my head.
The only real lasting s/e is that I'm retaining water like crazy. My ankles are still swollen all the time. I'm going to ask the onc for a diuretic when I see him on Monday for Herceptin.
As far as rads goes, it has been really easy for me thus far. I had a lumpectomy, which is why I needed the rads. But the boob isn't even really red yet. I've been putting on a cream that they gave me 4x per day. The people at the cancer center are really nice, and they validate parking (which my onc doesn't do). I feel like I'm getting back into my life again.
I'm at the finish line cheering for all of you who are still going through the sludge. You can do it! I know it SUCKS, but you can get through it! GO GO GO!
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To those going through the last of their chemos--Like Lisa--I am at the finish line cheering you on. My taste is back completely, my energy level is good, my nails were sore but seem to all be fine, constipation ended, the achey bones and joints are gone. In general--feeling pretty good. There is light at the end of the tunnel. I, unfortunately, have major fluid retention so that isn't too appealing but they said this week that it will go away--granted may take weeks but..in the meantime, I will have to make do with looking like Violet from Willy Wonka (albeit without the purple colour)! (Lisa, My Doc wouldn't give me diuretic--said swelling will go down by itself...will wait and see!)
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Lisa - Good to hear from you!! So glad things are resolving! Even peach fuzz...how is the numbness? Getting better?0
