Great saying about depression
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MBJ, i am so sad to hear this news! I have not been on the boards at all lately but remember how kind you always were ,and all the help you gave me,we lived so close before u moved i thought we might have met one day. Please know you are in my thoughts and prayers Love Karin
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im so sorry mbj is going thru so much.. sending all the prayers "good stuff" your way!!3jays0
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I just heard about MJB as well. Oh that is so horrible and scary. Can't believe she was so mis-diagnosed. I so hope you are getting relief from your pain. We are all here for you and thinking and sending prayers your way. Let us know how you are when you can... That just is so devastating and scary.... Oh I just hate this disease so much!!
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I know all of us, at one time or another, have been paranoid about a lump, bump, pain, etc. But sometimes I feel like our doctors discount our fears without really checking to see what is going on. I don't think anyone took MBJ's pain seriously. Maybe if they had she would have been dx much sooner. It just makes me so angry that she has had so suffer this whole time waiting for tests that should have been done immediately. The same thing happened with my Grandma. They told her the pain she was feeling was just arthritis when if fact it was bone mets, too. Wonder how many other recurrences are misdiagnosed in the beginning. It's so scary.
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I was searching for some info on something and a post caught my eye. It's from a member on here who has spoken to MBJ. She said she is still in the hospital. She has mets in the spine, shoulder and liver but the liver lesions are small so that's good news. They've started her on Tamox as her cancer is high in estrogen. Didn't mean to be a stalker on another thread- just thought a lot of you would want to know.
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Thanks kate that gives some relief. Maybe when she typed hospice she meant to type hospital. It was a little crytic. I give you all permission to stalk me if you're worried. Its nice to know someone cares.
Another day of constant migraine and vertigo. Im loopy on drugs laying down. I hope in two weeks this crap is gone. See once on 13th. If migraines are from tamoxifen may have to come up with another plan.
Hope everyone is having a peaceful weekend. Kate I literally just killed the pint of ice cream! It was gooooood0 -
{{{{{{ DiDel }}}}}} Now YOU have to get better!!!!
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DiDel- I'm sorry you're still not feeling good. (I thought the ice cream was going to do the trick! Darn!). I wish they could figure out what was going on sooner. Wish I lived there I'd bring you a martini or two or three. Your head would still be spinning but you wouldn't care so much! Keep us posted of I'm going to stalk you too. (((HUGS!)))
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Wow I just got back on after a busy weekend.
MBJ you will have an army of caring women offering prayers to whatever higher power they connect with for you to be able to find the right combo of chemo, radiation, pain meds to be able to shrink and stop any progression!!!!!! Peace to you.
Diane, I have vertigo every once in a great while that will come out of nowhere. I went to an ear nose throat doc and he showed me how to roll from side to side to dislodge a floater in my inner ear. Hope you get relief. he said little bits of cartilage or somthing can break loose in there and cause vertigo.
The fat injections went well. I can definitely see an improvement, however wish he would have knocked himself out a little more removing ALL fat from my butt! ha. I see him for the first time tomorrow after the surgery. I do not know exactly what the scars around the areolas look like as they have steri strips still. I am seeing more bruising about 4 days after and it is tender to the touch for sure but ok. I want another round then areola grafting and I am going to have Vinnie from NJ do the tatooing.
Kate you are so right. We have to push and push sometimes. I had a lump in my breast and PS thought it was scar tissue and to watch it. My best friend with breast cancer said "and you are ok with that" She was really surprised so I did for about a month and a half and thought no I am not ok with that. Had an ultrasound and they ruled anything out. It is a fine line sometimes isn't it?
My good friend Kathy who passed away from breast cancer in October ........ her family had her Care Bridge postings made into a book. An inspiration as she was honest about how difficult the journey of BC is but she really did learn so much about herself and family and friends and was so faith filled.
My wish for all of us is that we have a journey that will be helped by being lifted up in prayer (no matter what beliefs we each have) and surrounded by honest support.
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Thanks all!! Hopefulhealing Nice wish for us all and I am glad to hear the FG made a difference.
My vertigo and migraine seems to be lessened today. I can only take the meds when I am home since they make me loopy. Hopefully by the end of this week they will both be gone.
Ok I am at work...just checking in. Love all you ladies and wish you a week of no pain, no drama and lots of love and peace
Diane
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Diane,- so sorry about the veritigo a friend of mine had that after riding a roller coaster and it was really horrible. Till you go through it you don't realize who debilitating it can be. Hope you feel better.
Still thinking about MBJ - just .... well just thinking about her and hope she is feeling better and home really soon.
Is fat grafting covered by insurance? Or is that fat harvesting? Not that I understand the difference of course!
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Stanzie- I think fat grafting means they are going to graft, or inject, the fat into another area of your body. I think most insurance companies currently cover it but there's rumblings that some, like BCBS and Cigna, are rethinking their positions. I hope it's not a trend.
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From what I read up on fat grafting, unless it's transferred (both ways - out AND back in) one drop at a time, the fat cell gets damaged and it's no good and will only be temporary!! What a waste of a procedure!! The doc in Florida was the one that pointed this out, the guy you went to Kate. That's why he was so successful in his procedures (or so he said).
So, if there is a lot of failure and/or more treatments needed, I can see why insurances would balk at it. They have to figure out a better transfer system...
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Well, if it only went out that would be lipo, yes? Or are there other procedures?
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barbe- I think some PS's inject it back in kind of in "globs" and only about 45% is retained. There's also a greater chance of it calcifying which would be kind of scary for a previous BC patient. My PS, Dr. Khouri, said the combination of injecting it drop by drop and first creating a space for the fat to go (either by swapping to a smaller implant or using something called the BRAVA) the retention rate is more like 85-90%. I'm about 9 months out and that's about what I've retained- maybe a little more. (Could be I've just put on weight, though, which also goes to that fat! lol!)
Stanzie- I haven't heard of any other procedures. Maybe fat grafting and fat harvesting are the same thing?
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Did anyone happen to see the 60 Minutes segment on anti-depressants? There was a doctor on there that researched the placebo effect. According to him, for mild to moderate depression the difference in symptom relief between anti-d's and placebos was practically identical! He also said that drug companies can do 20 clinical trials and if only 2 produce the results they want they just publish the 2 and ignore the other 18! He analyzed ALL the clinical trials to get his results. I thought this was so interesting. It certainly makes me reconsider my meds. If you want to check it out it's at-
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I thought it interesting that they said that moderate exercise was the same as taking the anti-d's. I've seen that before but never practiced it in theory. lol! But now that I've been storing up for my next fat grafting
I might have to test it. I'm on Wellbutrin which is about the only one you can supposedly stop cold turkey. I'll probably still wean, though. I've tried going off them before but did not add exercise so we'll see. Maybe my placebo can be a nice glass of Merlot instead! 0 -
Kate, actually I did have a friend that found she got horrendous headaches trying to wean herself(with her doctor) off effexor and she did find a glass of red wine took the headaches down to managable and she was able to get off.
So is the fat grafting the same thing Suzanne Sommers claims is regrowing new breasts? I thought she said something like spinning the fat down to stem cells and injecting them drop by drop. Is that also what you had done. Now getting confused. However since I had the lat. I guess there isn't any take back on that procedure- so wish I hadn't done this one.
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I was able to catch up on all the posts last night. I layed in bed for two hours thinking of MBJ and finally got up to read. Was late to work by an hour today because I wanted to talk to DH about Mary. I am sad we didn't have a chance to meet in October like we had discussed. I don't know what it is like to worry about every bump or bruise or ache. The closest I can come to that constant thread of fear is the seven years between my DX in 2004 and BMX on 2011 with the constant (quarterly) testing to be sure I was okay. I did not do radiation or take tamoxifan, so they monitored me closely. It was a roller coaster prior to testing and afterwards waiting for the results. I was always living with the thinking "If. . . then. . . Is that what it is like for you that have had invasive cancer and chemo? Always living with the what if?
MBJ was so kind and encouraging to me and I want to send her light and love and healing energy. Mary, I hope if you are able to read this thread, you know how much we are in this together and all love you.
Two weeks ago our local Cancer Support Community (a nonprofit that provides therapy and all kinds of classes and support groups) had a workshop on mindfulness. Since returning to work my meditation/mindfulness time each afternoon has gone by the wayside. Well something this doctor said stopped me in my tracks. Whether you actually "see" something with your eyes, or visualize it in your brain, it gives you the same results. She said scientists are finally able to prove the mind body connection. Our brain doesn't know the "truth" between seeing and visualizing. So if we spend 30 minutes visualizing strong cells making a strong immune system or like me, visualizing nerves regenerating and feeling returning, the brain believes and acts on that visualization. Hmmmm, that was pretty motivating for me to take some time again to re-engage my mindfulness practice.
It is interesting how connected I feel to all of you and how your lives--ups and downs--matter and impact me.
Barbe, I think the thyroid drug you are on is a generic. My bottle has the same name, but then says Synthroid. I've been on thryroid medication for 20 years and EVERY doctor along the way says never take the generic for thyroid. I pay extra though. :-(
Diane, what are the migraines from? Maybe I missed what your PCP said. Sounds horrible, so I hope you are getting better.
"There is a crack in everything, that's how the light gets in." May we all be filled with light!
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Stanzie- Just posted back and I lost it! Don't you hate that? Anyway, I'm no expert but I think what Suzanne Somer's PS, Dr. Aronowitz, is doing that is different than most is he is removing extra fat and then separating it. He removes the stem cells from part of it and puts it in the remaining fat so it is kind of "super charged" with fat cells and then injects it. I think it's supposed to help with healing, growth and the return of sensation. I think there's mixed reviews out there, though, and some have said they're concerned with the stem cells regenerating breast tissue. I don't see how that would work, though. Wouldn't the stem cells be fat stem cells, not breast tissue stem cells? Anyway, Dr. Aronowitz is the only PS I've heard of who is actually doing clinical trials for this. You have to be 5 years from DX but everything is paid for. A member on here is having her surgery with him tomorrow. She's not 5 years out so it's not covered but her insurance is picking up part of it. I'll be curious to see how it goes.
Lindsay- That's so interesting about the mindfulness. I'm going to have to try that for a lot of things. Just wish it would work if I visualize my love handles gone!
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I took a mindfulness course over 17 weeks. It was AMAZING!! I brought my DH to a full-day Saturday program that was 6 HOURS. The instructor covered the clock up and at the end asked if we could tell how much time had passed. Most said 3-4 hours, and we were stunned when he removed the cardboard and saw we'd done the full 6 hours. VERY refreshing.
If you have ever been on a beach, you can sit and take in the sun and sounds of waves and feel like you've been away. I also use imaging when I'm getting a massage as pushing the bad stuff out. I love learning about my brain and my brain loves that I do that!!
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Hmmm Barbe you might be on to something...maybe that is what i need.
I have been a BEAR these past few weeks..honestly I cant stand this headache anymore. I cant focus at work...I cry and cry I am an emotional basket case. I did get my period which didnt make matters any better. I cant wait to see my onc and determine the cause of the migraines. My PCP thinks its the Tamoxifen and hormone flux. I will see what my onc says. Quite honestly I would love a scan but he never never never orders scans. I swear sometimes I really think my insurance is dictating my health care. I just have to hold on two more weeks till I see my onc.
I just popped and Ativan and off to bed...MBJ PMd me and she sounds so much better and is ready to fight! She knows we are all here for her. GO MARY!!!! Feel better and stronger each day!
Good night ladies
Diane
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Diane, a long-term headache can be a bad thing sometimes, and I know that you know that. Does it seem to be sinuses? Could it be allergies? Has it gotten better now that you've started your period? It's impossible to function properly with a headache, especially as our minds go to mets. And I know you've been kicking that around. Why wait 2 more weeks? You shouldn't have to suffer that long... Does the Ativan help??
{{{{{{{{{{{{ Diane }}}}}}}}}}}}}}}
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thanks barbe the ativan does help a bit. I have this weird sinus pressure but no congestion. My PCP said no ear infection no sinus infection but I could still have fluid build up in my inner ear...although ear doesnt hurt and no problems hearing. Yes i am stressed but will wait till I see Onc. I have to "check in" with my PCP end of this week to let him know how I am feeling. He may send me to an ENT but if that is the case I will wait. I am tired of copays and new docs.
Good night all
Diane
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Kate you are funny. The first thing I imagined was getting into size 8 pants! Now I think we are suppose to have loftier goals than love handles and skinny jeans!
Barbe, the course sounded amazing. It would be so helpful to have some ongoing personal instruction.
I too am curious what susanne somers is doing especially the stem cell stuff. Last year I was at the Salk Institute near San Diego and was on a tour to see their medical research. We walked past a table with a dish of stem cells. The doctor put them under the microscope and next thing we knew the whole dish convulsed. Mind you this dish was NOT hooked up to anything--just cells in a 3" dish. Turns out they were heart stem cells, and they continue to beat(convulse) WITHOUT being attached to a heart. Wow, crazy things in sience that are so fascinating to see!0 -
THAT would probably be in my top 10 things to see, Lindsey!!! WAY too imazing!!!!
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Wow, that is totally amazing - the heart cells beating! Kate yes I would agree that seems like they could only regenerate fat cells not breast - but why would that bring back sensation? I feel like I'm missing something here...
Barb - thatsounds like a totally amazing class. I think I'd first like to go sit on the beach with a fabulous book and go lose myself for a while first....
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Stanzie my PS said sometimes it is covered and sometimes it is not. So I had to pay $1800 up front then if the insurance covers they will cut me a check. I saw a thread somewhere that had a link to insurance codes for BCBS that can be used. I brought it in to the office and they were totally wrong codes. So be careful and check it out with your PS office to make sure they are up to date and correct.
I will have a second round on May 4th. I am having some pain still but I am thinking it is because this is probably the area he did the most. Maybe I have some nerve regeneration action going on
Also he was pleased with the outcome so far. But have to wait six months for round two which was disappointing. He wants to make sure that we see for sure after all swelling down and how much is reabsorbed. So keeping fingers crossed I maintain a lot of it.
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Stanzie my PS said sometimes it is covered and sometimes it is not. So I had to pay $1800 up front then if the insurance covers they will cut me a check. I saw a thread somewhere that had a link to insurance codes for BCBS that can be used. I brought it in to the office and they were totally wrong codes. So be careful and check it out with your PS office to make sure they are up to date and correct.
I will have a second round on May 4th. I am having some pain still but I am thinking it is because this is probably the area he did the most. Maybe I have some nerve regeneration action going on
Also he was pleased with the outcome so far. But have to wait six months for round two which was disappointing. He wants to make sure that we see for sure after all swelling down and how much is reabsorbed. So keeping fingers crossed I maintain a lot of it.
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hopefulhealing...I meant to ask if you were taking Arnica Montanna pre and post op to help heal bruising. I took it for all my suregeries and honestly not one single bruise anywhere. My PS gave it to me each time before surgery. They are like little sugar pills that dissolve under your tongue and you take them a 3 times a day for about 5 days. It was great I even got some before my sinus surgery not a single bruise I tell ya.
Cant wait to discuss FG with my PS.
Good night all ...its been a long day.
Diane
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