The Hermit Club
Comments
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Markat,
I have the muscle aches and joint pain too! It came out of nowhere three months prior to my BC DX. I still have no answers. It gets worse every day. The legs aches keep me up at night. I can't figure out if is is muscle or bone. I can't bend my legs to sit Indian style or even one leg folded under me. I was a BEYOND fit just three years ago. I don't know whose body this is now.. I just just and sometimes Vodka is the only band aide. I worry that the Arimidex will make it all so much worse.
I am with all of you.......
XOXOXOXOXO
Laurie -
Lol! Just read a lot of your past posts and they make me smile. You girls rock!!!
Blessings to all of you!! -
I've heard that nerve damage is serious.
I remember being told by former dentist that a tooth was resting on a nerve.
Tricky extraction to avoid paralisis on one side of face.
Hurt for me to vacuum or even bend to makeup a bed when pregnant.
Tomorrow, excellent results.
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LaurieParr,
Not funny!!
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Laurie I feel bad for u'r DD having to have bed rest, cuz I'm sure it sounded good for a day or 2 but to HAVE to have it is probably scary for her. Prayers going her way.
Now WTF are u talking about u'r arm, I don't understand, u can loose the use of it because of a nerve thingy? OMG u have to be so careful, is this something that will heal and then u'll be all right or something that could happen anytime--this all sounds crazy to me, but u know I'm not medically inclined to know much--Prayers for u too, Laurie
U know what I do when I say I'll say prayers I say them right away, otherwise I'll forget who I'm praying for. I know I'm bad.
Someone explain Laurie's arm to me.
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Hi Camille,
When they did the last IV, I felt a "jolt" of electricity down to my thumb. Basically they tore a nerve with the needle and now I have a trauma to my arm that will spread if not treated. They prescribe Lyrica which is used to treat nerve trauma and a compound (specially mixed ) cream to treat it. The neurologist will do a nerve study on my arm in a week to see the extent of the trauma. The hospital is taking responsibility, but it has been a nightmare of phone calls, documenting and follow up to receive the treatment. I can heal if treated aggressively. It may take up to a year though.
I will be fine I'm sure. Positive thoughts!!! -
Oh Laurie I'm sure u'll heal, but what a crazy thing to happen to you. I' just never heard of that. Oh they'll take very good care of u--since they did it especially.
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Laurie--Love your positive spirit, and so sorry you're having to suffer through the trauma. It's especially hard to see an old fit, healthy self become a shadow. Keep that spirit, though. When I had my back surgery (lots of nerve issues/pain due to a crumbled L5S1 spinal mess) I was told not to give up. Healing would be slow, if at all, so I was told to be persistent. I still have issues over seven years later, but things Do improve. I have had to accept I will never be my strong, painless me... but the new version is still making progress... and who knows what the future holds? Hugs to you and yours. Prayers for your dd, too!
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Hi hermits: doing some conference calls for my client from home this morning and checking in here on you ladies.
Laurie-sorry to hear about the nerve damage. I had some to my femoral nerve in my leg last year after abdominal surgery. It has not compromised the use of my leg, but there was considerable numbness on the top of my thigh which has improved with time. Also lost the sensation around my incision and abdominal muscles. But the good news is, with time and rest, nerves can regenerate themselves. Take the advice of your doctor for how to best heal your situation. You need to get plenty of rest to get through this and all the rest that will follow. The reality is with being cut and poked, our nerves are at risk.
There are three types of AI's including Arimidex, Femara, and Aromosin. One of my MO's said the goal is to find one that works for you, as everyone has different SEs. They started me on Arimidex as it is believed to be one of the most effective to reduce reoccurrence risk. I think Femara is good too. I think less is known about Aromosin and it's effectiveness. You will be seeing your MO through time and he/she can make the changes to your meds depending on your quality of life issues as you start the Arimidex. I have been on it four months now and my body is adjusting.
Teka, Skittle, Markat, Cami, Lori, and all the rest, Tuesday hugs coming your way!
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Laurie- also, vodka does help. I like mine in vanilla or grapefruit flavor ala Absolute.
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Laurie, red wine helps too--good for the blood flow.
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Heya - lots of reading to catch up since the last time I checked (Thurs, I think). I'm doing well. I had a Herceptin treatment on Friday. The nurse chided me a little about not having my heart scan done but it's not my fault that apparantly that dept doesn't leave message if the answering message doesn't include a name. Sheesh, you'd think they could just leave a message to call Kaiser at whatever number. The MO okayed me to have treatment anyways but I have to have a scan before my next one in August. The chemo nurse made the appt for my scan for me and couldn't get any sooner than Aug 5 so my last Herceptin will be delayed from Aug 2 to Aug 7. Ah well, still glad it will be my last one. Hopefully my hair will start growing faster once I'm all done with that.
I think the vitamin B12 I've been taking is helping with my feet problems. My feet have felt 'weird' and sometimes really sore since about chemo 4 or 5 though it didn't get really bad until about 2 months PFC when I suddenly was getting peeling and blisters. I don't have the classic numbness of neuropathy but it seems to be similar to that or to hand/foot syndrome that I read about. Either way, it is nerve issues and I think it's improved since I started the vitamin supplement about a month ago.
I was told today that one of the ladies in my work group got a call yesterday confirming that the biopsy she had last week found cancer of some sort. She's out today with an appt to talk to a surgeon. She had expressed some concern to me last week before going to her biopsy and I tried to be positive. Even with my 'experience', I really am not good at talking to people so I'm not sure how I will handle talking to her when she comes back in though I know she will want to. I'm really hermity and private in person and while I am okay with talking about facts and stuff like that, I really am not great at dealing with emotional issues especially in person. I'm at the point right now where I am trying to think less about cancer and get to feeling 'normal' again.
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Hi Jinkala--glad u almost done--godd u'r getting the scan and who can blame u aboit talking about this ouutside of this world cuz none of us want to think about it--I's how we've lived for so long. Tell her to join the board-there are alot of topics she might find some interest in--Oh but maybe not this one--nevermind. And I've heard about the feet thing, I had mine during chemo tho so I guess it just hppens when it happens. Sorry it's no fun.
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Thank you so much Jazzy, Skittle, Camille, and Jinkala! You made me smile yet again. Thank you for the info about the Arimidex too.
I had my CT Scan today for my radiation treatments. I didn't know about the tattoo markers. Boy, did those hurt.
I start the treatments next week, so I decided to go Phoenix with my husband and son for baseball tourneys tomorrow. My husband is coaching.. I'm looking forward to getting away for a bit.
It is hot here. About 114 degrees. Phoenix is even hotter. It gets yucky sitting at the field.
Love to you all.
XOXOXOXOX -
Hi All - Laurie - you should come to my neck of the woods : ) I live near Oakland, CA and the high here was about 65 - it's foggy and cool - I am sitting here in leggings and a sweater!
I have been thinking of all you - you are all inspirational to me. I finished all my treatment last Tuesday! It's such an amazing feeling - the past year was a blur - and I am grateful to have met you!
Love,
Marilyn
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LaurieParr: I hope your nerve pain goes away...seriously! I understand about not knowing whose body you are living in. I feel the same way. I was FIT before my dx...wondering how long until at least I can get back into shape. Ahh, something I can control! Hopefully whatever they put me on after radiation (tamoxifen or whatever) won't cause weight gain.
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Hi hermits!
Jinkala and CV, congrats on finishing or almost finishing those herceptin infusions. My sister has her final one next thursday and is so looking forward to being done.
Jinkala- I agree with Cami, refer them to this board. Everyone's diagnosis and treatment is so different, it is really hard to give people advice. Giving them a place to go to get information is sometimes what people really need.
Laurie- maybe a change of scenery will help. I hope you can get some rest too while you are there-don't be afraid to let your family know you need to slow things down. Hanging at the hotel to get some rest while your son is playing may be alright too. The radiation treatments may fatigue you, so good to be rested up before that begins.
It's been cool and overcast for 2 days, only in the 70s and a lovely break after 100 plus temps last month. No rain since sunday night when we got the last soaker!
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Marilyn Yippee--it's done---
Laurie di u mean the tats hurt? Oh I'm so sorry. Please wtch u'self in the heat and don't get dehydrated--with all that going on for u it happens quicker. So be cautious.
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Marilyn, Jink, congrats and happy dance. Wonderful when we can say one more step to normal (or what may be our now normal.)
Jazzy, ooo, 70's! and Marilyn, a sweater? We hover by 100 for weeks on end. Still no rain. (But, Laurie, I think the heat award goes to AZ. Wow, you be safe out there!)
and Jazzy, I've never had a massage therapist... My foot pain is something I grant to the Arimidex and try to cope... DD2 has had sports injuries and suggested ice; DH suggests more foot support (sorry, but I love flip flops whenever the weather allows... and I know they're not good for me...)
Camille, how's your back? Able to walk a little better?
slickch, when you are up to it, jogging with Capone will zip you into shape! He looks high energy. (Cooper is my current exercise routine.) I've been dieting and have lost 8 lbs since school let out. (small victory!)
Lori, Teka, hugs and hope you are both ok...
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Skittle- Congrats on your weight loss, I am so proud of you! I have surgery tomorrow & after recovery from that, radiation. I'm pretty concerned my right axillary dissection is going to ruin my workouts! I hope I can still lift weights, run on the treadmill & walk Capone...I hear lymphedema is a real b*tch. Do you have any experience with that? Reading the lymphedema threads is making me nervous...
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slickchickie...I had "reverse axillary mapping"--a blue dye procedure that via dye indicates any cancerous nodes. They only removed one for biopsy as all indications were clear. The scar certainly indicated deep incision, but I have been deeply blessed with no lymphedema. (My dr is internationally presenting findings, and is always doing something researchy... Each appt. I plunge each arm into a water tank, and the nurse measures gain or loss in lymph accumulation/circulation/atrophy whatever. So far, so good.) Your workout will most likely demand that you let yourself heal a bit before stretching those tender stitches. I gave up my treadmill for longer than I'd wanted, since each "bounce" and each step caused more jiggle than I could've imagined (I am not large chested so expected minimal ouch after lumpectomy/partial mast... wrong, again.) Give yourself healing time, and you are so young, you will gain strength and stamina quickly, I think. (But truly don't overextend in an eagerness to get back to normal. You have to baby your body for a little while to overcome the shock you've endured.) I'm sure many hermits here can help guide you on any lymphedema helpful tips... Hugs and high hopes for tomorrow! Prayers will head your way. (and thank you for the congratulations. 8 isn't much really, but it is a struggle on these drugs to lose at all... for me, anyway. I am aiming for about 10 more... Don't know if I'll get there or not... but at this point am willing to try.) Again, best of luck tomorrow!! Let people help you.
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Wish that was my 8 lb weight loss ;o)
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I do have LE, took out 14 nodes. Woke up with it. If you do get it, the LE threads are great!
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Good goin' Skittle.
Slick I have LE but I think I got it a little later--I read u'r have amastectomy right" not a lumpectomy. If I'm right it's amazingly not painful but u do have to baby u'rself for a while either way, (prayers)
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Slicki- good luck tomorrow. We will be thinking of you and hoping all goes well. Hopefully the next time we hear from you, you will be on the other this and healing well.
My lymph node dissection bothered me more than the incisions on the breast, mostly because they cut through muscle and that is always a bigger healing process. I did not do any exercise, including lifting weights, for many months after my surgery. Talk to your doctor in your post opp visit about exercise, what to start when, what is okay or not. You have to be careful with lifting for awhile too. Like Cami says, you are young and will recover faster but you have to be super careful not to overdo.
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This time tomorrow evening on the mend, and soon back home with Capone.
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Slickygirl Teka's right look at it that way, Oh I remember after my first visit to the Dr. he told me to get a smaller purse cuz mine was to heavy--he lifted it. I never thought of that. So I actually did, first time ever. hahaha
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Thank you for all of your support, ladies. The way I feel about this surgery, the loss of my breasts is horrifying. Worrying about how the axillary dissection is going to affect my everyday life is overwhelming. I'm going to try to do what Teka said: just focus on getting back to Capone. We'll start with that.
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Sweet dreams!!
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Slic today is the day--u probably won't read this but we're here for u, come back when u can.
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