2013 Survivors!!!
Comments
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You're very welcome, Believe. LE can be overwhelming in the beginning. Check out the Lymphedema Newbie thread. You can get some helpful info there and there is a resident expert on the thread who always seems to be able to answer all kinds of questions. To answer your question, when I had fluid retention - I was putting the sleeve on when I got up in the morning and taking it off anywhere between 7 and 9pm depending on what was going on for the evening - so basically the bulk of my awake hours. Once the fluid was gone and under control the therapist told me to wean off of it. So I'd put it on later, take it off earlier - and eventually about 2 weeks ago I just stopped wearing it. So far so good. On days where I feel like I've done a lot with my arm, or it just happens to feel achey and tired by the end of the day - I wear my night sleeve. And if I'm going to be doing anything strenuous - I wear my regular sleeve for the activity. You'll get the hang of it. The key really is to do the manual drainage regularly along with whatever exercises they teach you. You'll get it under control!
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You're very welcome, Believe. LE can be overwhelming in the beginning. Check out the Lymphedema Newbie thread. You can get some helpful info there and there is a resident expert on the thread who always seems to be able to answer all kinds of questions. To answer your question, when I had fluid retention - I was putting the sleeve on when I got up in the morning and taking it off anywhere between 7 and 9pm depending on what was going on for the evening - so basically the bulk of my awake hours. Once the fluid was gone and under control the therapist told me to wean off of it. So I'd put it on later, take it off earlier - and eventually about 2 weeks ago I just stopped wearing it. So far so good. On days where I feel like I've done a lot with my arm, or it just happens to feel achey and tired by the end of the day - I wear my night sleeve. And if I'm going to be doing anything strenuous - I wear my regular sleeve for the activity. You'll get the hang of it. The key really is to do the manual drainage regularly along with whatever exercises they teach you. You'll get it under control!
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So happy to hear things went well Believe (I haven't been on the board for about ten days, and was holding my breath until I read your next post about the all clear)
Aruba - love the beagle in the pocket - looks like the new puppy at our house -
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Websister - ready for tomorrow's pocket party. It's so much easier in a group. When I was sitting in the radiology dept. I talked to another patient. She was just starting her journey. Brought back uncomfortable memories. I did tell her about this site and how wonderful you all are!
I'm available for all other pocket parties this week too. Life is better when it's shared.
Thanks KKluziel.
So far so good on my anti depressant pills. I'm sleeping really good and my aches and pains are hardly noticeable! I'm still not depressed - never have been ... Tomorrow I meet with the physical therapist. Maybe she can loosen up my shoulder too.
Hugs to all. Make it a great week.
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Quick update. The carbo is kicking a$$!!! The tumor on my back can't be felt and liver size and functions are back to normal!!! One more round and I think they will scan to see how it's getting the lung and lymph nodes in chest. If they can get me into remission (their words) I can stay on the Xeloda for maintenance.
The only drawback is the the xeloda is causing the hand and foot syndrome but so far it's bearable. The shortness of breath is gone and I feel better than I have since last Nov.
Will try to catch up soon.
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yaaaaaay Lostinmo!!! Happy dancing here for you, woooohooooo!
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lostinmo.......great news.....so happy to hear that.....
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Lostinmo - wonderful news!!! You made my day too. So good to hear from you.
Aruba - in your pockets next week too.
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Believe - thanks - I agree - so much easier in a group!
Kkuziel - so nice to see your post
LostinMo - I am thrilled for you! Wonderful news!
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Thanks for the pocket party, ladies! Really needed it today - too close in dates to two years June 8th to have done it today!
I had the mammogram, they did a digital as well as two high magnification views on the left, then asked me to wait go back to the dressing area and wait. Then they came and took me over to the ultrasound waiting area and asked me to bring my clothes with me. Hadn't expected an ultrasound today and didn't realize just how traumatic it all was for me two years ago until they decided to do one today. The feelings all came back ten times over! They did the right chest wall and axilla and the left breast and axilla. When the U/S was done the tech told me the radiologist would be in touch with my doctor and let me go. Not sure I really breathed until then. So glad to be out of there. So glad you were all with me.
Take care everyone
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lostinmo - woo hoo! wonderful news.
websister - still in your pockets until you get the all clear.
First day back in the office today - phew ! its hard work. Glad I am working home tomorrow - really do use our brain a lot at work
Hugs and positive mojo to everyone xxx
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Websister - yeah, the appt is over. I could hear the stress in your post. I hear you about running when they say you can go. Big sighs. Hopefully that's it for another 6 months.
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No phone calls today so I am going to assume that everything must have checked out.
Thanks again, everyone!
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What is it they say... no news is good new0 -
Hi everyone, I have not been on here for ages, but have been reading about everybody's happy occasions, ups and downs, stressful check-ups, aches and pains. It is still hard to believe that one can live such a normal, healthy life for so many years, and then BAM, you suddenly find yourself on this bewildering rollercoaster, and flurry of activities, which calm down after treatment except for said checkups. Life certainly changes in a big way, but we have to soldier on. This sisterhood has been a mainstay for me - you kept me going when times were tough. Thanks so very much to each and all of you!
Lostinmo, I am over the moon happy for you, and that you are feeling so much better.
TwofriedEggs, so sorry to hear about your husband. I hope that he is comfortable and free of pain. Must be so hard though - BIG HUGS to you and your family!
As for myself, I had to take another trip to South Africa in May when my mother passed away. She had been in a care facility these last few years, and gradually slipped away from us over time due to an inoperable brain tumour. In December when I was there, she did not recognize me (or anybody else) any more. The end came as a merciful relief. She and my father had a wonderful, blessed marriage, and she had a full and fruitful life of service to others. So grateful for that. It is really hard to lose a parent, and I still can't believe she is gone. Together she and my dad were a formidable team, and my siblings and I were so privileged to have had them as parents. All the good memories will sustain us in times to come.
A good day to you all, and I will try to check in every Wednesday.
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Yay for sure Lostinmo! Websister good news from you too! I was in Calgary this weekend but very brief trip with my husband though I thought of you when we went by the mall we had coffee at in November. Just got home today after 2 weeks away including the yoga/horse retreat in Montana with 7 other breast cancer women~~more later on that but so tired from the road trip after.
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SHIT!!! I missed Wednesday!!! 😁 Forgive me?
Lostinmo: YAY!!!!!!!!
Believe: Sorry about the LE. glad you got in sooner rather then later.
Momof3: carolla. July 3-7.
Teeball: welcome home. We missed you.
Aruba: beautiful family. And you looking smoking hit.
Shiela: well ain't that a bitch?! But I'd KILL for a tummy tuck!
Ok. It's official! I live in a freaking jungle!! Between the Mosquitos at night and the WEEDS!!! I give up!
Still looking for work. Met with a recruiter today. I'm more miserable every day. *sigh*
Hugs ladies!
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juneaubugg - I will be in Corolla July 5-12. Maybe we can try to meet somewhere. If you know the street you will be staying at PM me and I can see how far it is from our house down there.
I am doing ok and have started PT for my shoulder, but it is very slow. I will be very busy with graduation and end of school year activities, but try to at least read every day.
I go for a mamo on 6/24 and would love to have full pockets if you are available!
Hugs to everyone!!!!!
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momof3; I'll find out and let you know... and i'm in your pockets on the 24th.
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Howdy. Checking in to let everyone know I've been baking all day and I'm ready for all upcoming pocket parties. I've been making cranberry toffee crisps and they are delicious.
Of course before baking I spent time on the treadmill ...
Make it a great week end.
Hugs
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I did the coolest thing today! I broke a board at my son's karate ceremony! With my hand. On the first try. I'm feeling very cool right now!
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I had the worst appointment in my life with my Onc. I see him every three months.
I had been told from the genetic councilor that I may want to consider a double mastectomy and removal of my ovaries because of my family history of breast cancer. We also had discussed a complex cyst that last time I was there and he said I could consider having it biopsied.. This time he was totally against everything. Then said maybe I should have a double mastectomy if I was so concerned about a cyst and then I should see a surgeon to have it removed, I said I don't want surgery just because and have more tissue taken out of my breast I want a biopsy, Then he was saying I was misinformed and he was the doctor and I should trust him- That when he takes his car to the mechanic he doesn't tell the mechanic how to fix it. He went on and on and on and finally I got where I was just in tears. I have been very depressed lately and very weepy. He told me that Tamoxifen can cause depression but that wasn't my problem- My problem was I was fixated on my breasts and I needed to get past that- That treatment was over and I am being watched and he was the doctor and I needed to trust him to take care of me.
I ended up sitting there crying. I felt hopeless - and he started to rub my leg saying U are ok- U will be ok- Your fine-- Why are you so sad today? You are not normally like that? Then he said you want an MRI? We will give you one if that will help you. I will also send you to your surgeon to talk to him about your biopsy.
I wanted to say he had been lecturing me and I told him I was depressed so why would I not be sad the idiot!!
I got dressed tried to sneak down the hall the opposite direction of where he was standing at the desk- He said come here stand by me while I reorder your meds and then he walked me to the room to make my appointments and told me standing in the hallway-- That if I chose a double mastectomy it would be because of choice not because of genetics- He said do you want one? I said NOOOO..
I wanted to run the hell out of there and not sure where to find a new doctor..
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Ndgrrl, this doctor sounds weird, and creepy too, touching you like that. It is inappropriate to say the least. What's up with this guy? Can you maybe get another opinion? This all sounds really confusing. No wonder you cried, and wanted to run away.
Karen, good for you! I will stay out of your way - LOL.
Believe, those cookies sound downright delectable. Still at it, eh?
Here is a photo of my grandchild, Emily, held by her uncle, my youngest DS.
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Hi all!
Ndgrrl, I agree with Liefie!
Liefie, that little one is ADORABLE! You are truly getting all the ups and downs of the life cycle with your mother and grandchild. I know you are embracing each moment.
Lostinmo-great news! Thinking of you lots!
Kkuziel-I bet your puppy is soo cute!
Marianne-can i lose weight just following all your adventures? I love your spirit!
Momof3- I am right there with you in pocket
Tizzy glad you getting better and having some shed time! My flowers and garden are looking good but its early.
Believe-hope you continue to feel good!
I met with MO nurse as MO only sees those in active treatment. She told me Jews of Eastern European descent (me) have higher incidence of BC and heart disease. Wanted to kiddingly ask her if I should convert 😏. This week brings phys therapy for wrist weds, mamm and BS thurs and primary dr on friday for bp check as its been high since bc diagnosis so will now probably put me on mild medicine so daily pocket party ..come on over!
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Liefie, Love the red hair! She is just a cutie. It is good to hear from you. Sorry about your mom, hope memories of happier times help you through.
Lostinmo, so glad to hear your treatments are working.
Ndgrrl, I had similar appt. when I felt a change in my good breast. Nothing shows on mammogram on that side so I was treated like a nut case because I wanted further testing. My NP said she would contact my oncologist and try to get something set up. When I got to oncologist at next appt.they offered to set me up with a social worker to discuss my anxiety. I was sooo ticked off that I started crying and now they treat me like a nut case. Next appt. they asked if I am still doing self breast exams and I said NOOO! Then said "Why would I when you obviously know my 64 year old body better than me even though I found the change that led to my bc diagnosis?" The bc had shown on mammogram but they didn't think it was anything until my breast started dimpling. They just look at me like I'm being difficult. I just can't stand being treated like I can't possibly know anything and they won't order further testing because they can't see anything wrong on mammogram. Having done self breast exams every month for about 40 years there is definitely something going on. It may be old age boobs but having had bc it seems further testing wouldn't be such a battle between us. Sorry for such a long rant but I really sympathize with you.
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HI everyone!
I know it's been far too long--which necessitated reading about 10 pages of posts and I'm still only 5% caught up on your lives. I have missed you and think often of y'all.I was happy to see that Juneaubugg remains our most stalwart and enthusiastic cheerleader, best friend, and support coach for the group. A leader of wellness, indeed. I was thrilled to read about weddings (with pics!), birthdays, grandbabies, trips, and successful surgeries. I am also contemplative as I read about Lostinmo's progression. It's 3:00 in the morning, but as soon as the hours permit I'll break a glass in the sink and scream. I'm so pissed.
As for me, I am emerging from what has become an 18 month prison sentence of pain, treatments, and frustration. The second bone tumor I had was addressed this spring. Now that these two tumors have been radiated, the main movers of pain are dead. There are some lingering effects, but nothing awful. And I am finally feeling like it is safe to begin really living again. Scans are good and stable, medication (Exemestane) is working, and pain management continues to revolutionize my life. My employer stuck with me the entire time, thank God, so I am back at work and trying very hard to remember what it is I should do all day.
I have continued to blog, although I took a break when the tumor in the sacrum flared. I just needed to let it all happen. I don't think I could have blogged even if I wanted to, though. This one made me crawl into myself a little bit. Now I'm slowly crawling out.
I am going to try to be a more frequent presence as I have missed you and your friendship.
Much love and warmth,
Scorchy
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Hi Scorchy! So good to see you, and so happy you are out of the 18-month valley, and climbing upwards again!
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ndgrrl your dr sounds like the nut job! I would repose him and find a new one. This is not a disease to mess around with and you have to be comfortable. My first surgeon who dx'd me is the top BS in the state, heads up a major breast center and is an amazing surgeon. However I did not get warm fuzzy feelings with her and went to Sloan in NY. I IMMEDIALTELY had warm fuzzys with MO and BS and have been happy for two years.
Please look for someone new. You shouldn't have to deal with that putz.
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Scorchy, your posting here made my day!
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Scorchy it was a treat to get an email yesterday with the blog post and thanks also for getting back to post on here.
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