Any Texas Hill Country BC Warriors?
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Candy, thinking of you and hope your Dr appt goes well today. Like you said, one day at a time.
Linda, good to hear from you! I hope rads aren't too hard on you. One step closer!
((HUGS))
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Thought I'd share a blog post with you all. And a picture of my arm that is wrapped. OT wrapped it yesterday at 4 PM to get the swelling down from the lymphedema and she is going to measure me here in about an hour for my compression sleeve. It is extremely annoying.
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And the winner of the most scar tissue is...
posted by Holli Barrett on Wednesday, March 11, 2015
And the winner of the most scar tissue is...
.......... ME!
Unfortunately there is no prize associated with this honor other than pain, lung issues, and frozen shoulder.
I got to see my radiation oncologist (RO) Dr. Tierny this week. Poor guy... I had tons of questions. Go figure. He has a great staff. Shout out to Lar and JosJos (Rhett's interpretation of their names). My whole family loves those two ladies. It was like a family reunion. I even got to visit with beautiful Niya (who has an awesome birthday by the way :0) and remember a wonderful lady (my HEB angel) that recently passed from stupid cancer.
Anyway, drew blood to check my platelets since I still have petechiae (that's just a fun word to say) on my lower legs. I mentioned my frozen shoulder and during the exam he said I had quite a bit of scar tissue under my right arm and "foob". Similar to my lung. He said if there was a way to know I would develop scar tissue like this from radiation .... I just happen to be one of those lucky people who does. Anyway, since I had such involvement of my cancer on that side, he said even if we had known, we probably wouldn't have changed my treatment any way.
Good news though... I'd lost 12 pounds since my last visit (thank you Jenny and THRC). He was impressed since it is really hard to lose while on steroids. Since they should be completely out of my system by now, the weight should be easier to get off. I certainly hope so.... I'm slightly frustrated by the slow progress even though I can tell I'm getting stronger.
I know Lord... It's your timing not mine. Ugh, why is that so hard to get through my thick skull? I told my RO I thought I'd be done with everything by now and he said he did too. I guess I just get to deal with the physical stuff for 2 years instead of one.
I've been reading a wonderful book for cancer patients and people with chronic illness called Fight4U2 by Cheryl Merkel. She was one of the volunteers at our Little Pink Houses of Hope Alabama trip last August. It is encouraging me to change my lifestyle... Particularly food choices. It can be overwhelming though to make so many changes. Cutting out sugar has been the most difficult. But the book is very well written and superbly organized. So far I'm loving it.
http://www.amazon.com/gp/aw/d/1501028944/ref=mp_s_a_1_1?qid=142613 3262&sr=8-1&keywords=fight4u2&dpPl=1&dpID=41gwBaDCtOL&ref=plSrch&p i=AC_SY200_QL40
We went to health food store this week. Trying to change my health habits. But as I stared at the sweet man working there with a blank look on my face because chemo brain decided to kick in at the exact moment I went to ask where the green tea was... I had to explain to him I had gone through cancer treatments in an effort to avoid looking crazy since I looked crazy. He then started adding all this stuff to my basket. So I kinda got steamed rolled but I appreciated his passion for helping others.
Anyway... To make a long story short. He said something really profound. He asked my oldest (Grace) what time it was. She guessed 5pm. He said wrong... It is 30seconds until NOW. In other words, live in the moment.
My girls have been joking about it all week. "What time is it mom? It's NOW". But I think it made an impression on them and certainly gave me something to think about... Edit
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just checking in....met with surgeon on Friday and really liked her. Am scheduled for BMX on Wednesday the 18th. Trying not to think about upcoming surgery until the day before - but must admit I am struggling with how I will feel the first time I see my new body. Have looked at pics but it is not the same when it is your own body. I know it will not look pretty and am trying to remind myself that my life is so much more valuable than a pairs of boobs! I made the decision to delay any thought of reconstruction until after radiation which I know may limit my options. But I also didn't want to delay starting radiation or take a risk that a TE might fail or become infected during radiation. None of these decisions are easy and it is always so hard to know what is the right decision. My sis in law is staying an extra week and am so glad to have her here to give me courage and support. It also helps that nothing grosses her out - in fact she like to watch surgeries, . LOL I am thinking of you all - hoping Linda - you are not experiencing to many SE from radiation and that it will soon be over. I so appreciate all of you ladies....your support, tips, suggestions etc. are genuinely appreciated. I am grateful to have met you. Candy
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Are you having surgery in Austin? if so, what hospital? I may be able to arrange for delivery of underarm pillows and heal in comfort shirt. Let me know! Will be thinking of you on the 18th.
I wish I can relate, but I started reconstruction right away ... because radiation was not in the cards for me. So I left the hospital the same size I went in. One good thing about being small chested...no one ever knew the difference!
I do understand the part of losing the girls. It does take some getting use to. We had a going away party for mine (Pebbles and BamBam). My grandsons thought i was crazy....which is why they love me.
I am glad you have a great support system at home. Let us know if there is anything you need or that we can do for you. Pamper yourself and allow yourself to be pampered!! Hugs!!
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Vicki - it will be at David's in Austin. I did email and call BCRC on thur/fri but never heard back from anyone. If you can arrange something that would be much appreciated! I think u have more courage than me - I have heard of goodbye parties prior to MX but I honestly haven't been able to find my normal sense of humor through most of this. I guess the most positive thing has been losing my hair and wearing a wig... I can get ready in a matter of 15-20 minutes instead of 45! And of course I haven't shaved a leg or underarm in months! Trying to stay positive and everyone's words of support truly does help, thanks for being there!
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Hi ladies, I have read most of postings here, but I rarely post. Here are some of my experiences for Candy. I had Left MX, with extensive lymph nodes removed (level 2) but without recon 4 years ago. Because I did not have recon, the surgery was very simple, and the recovery was easy, I was back to work within a week, just carrying the drain tubes for another 5 days. Candy, since you already had level 1 lymph removal during lumpectomy, this time for the breast tissue removal should not be a difficult surgery or recovery. I have used prosthetic insert in my left side, but really wish I had BMX so I can have a flat chest. If you worry about if all ofthe affected lymphy nodes have been removed, you can ask MO to have a PET scan.
You can have recon anytime after the treatments are done. My friend had her recon almost 20 months later because she was required to put on some weight for flap operation.
I see that you will do the rads after surgery, be sure to ask doctor before surgery what kind of rehab exercise you should do to prepare for rads, especially for left side where you have lymphy nodes removed. My surgeon did not tell me anything and my left arm could not extend high enough at tattoo time and almost delayed my rads.
Candy, you have already gone thru lumpectomy, the BMX won't be any more difficult. Relax, it will be o.k.
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Just wanted to say Hi to everyone, I am new to this site and have only browsed the threads after finding out in January of my Diagnosis. I had IDC ER/PR + HER2- on my left breast, after much research I decided to move forward with a nipple sparing BMX with expanders. My surgery was 5 March, to my surprise the surgery was a little longer than 9 hours - I feel as though I am still recovering from the anesthesia. So, I am 10 days past my surgery and I have to say other than a few minor issues, I feel really good. Is that normal? I have my second follow up appointment with my PC next week (first fill) and my first appointment with my Oncologist. Does anyone have any recommendations on what to expect for the fill? Is it painful? Thanks
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@ Candy -...I'
I am not brave. A little off my rocker, maybe. But brave....not me! I will contact BCRC tomorrow. I may need to PM you for more info. But don't worry...I'll get you hooked up. The shirt and the pillows are wonderful!!
@cklier - Welcome to the group. This is the most supportive, loving, caring, compassionate group of women I've ever known. We try to get together every three months or so. Maybe you can join us next time. In answer to your questions regarding reconstruction:
9 hours for surgery?! Holy Moly! Now for the fills - I am sure every doctor is different, so I will go with what my PS did (which I understand is pretty typical). The fills are typically done in increments of 60, usually every two to three weeks. You don't want to push this because you want to make sure you don't stretch the skin too fast and possibly pop a stitch. The number of fills is up to you and your doctor. It depends on how "big" you want to go. Me? I was small to begin with. I wanted to go to a C or a D. My implants are 435 and I am a 34D. However, my friend is a 38D or DD and her implants are at 800. when you put us together, she doesn't look much larger than I am. But she is tall and broad shouldered, so 435 on her would barely be a "B".
The fills are uncomfortable, especially the day after the fill. I felt like I had a steel cage around my chest until my exchange surgery. Advil helped, as did hot baths. I became a huge fan of the hot bath during that time and I still love them to this day. Is it painful? No....just uncomfortable. Don't hesitate to PM me if you have more questions.
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cling - thank you for the encouraging post. I will definitely ask about the rehab exercises - great tip. My recovery from LX and node dissection went better than I expected so I am hoping the BMX will be similar. I think it will be the emotuonal healing that may take me more time. Thank you so VERY much for taking the time to share your experiences with me. Sending you hugs, Candy
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Candy, I hope your surgery goes well on Wednesday! I'm sure you will be glad to get it over with. So glad that you are happy with your BS. That means a lot.
cklier, cling, welcome to our thread! Pop in anytime~
Cindy, thinking of you.
Holli, sorry to hear you are still fighting LE. Hope it calms down before your trip.
My DD will be going for a Dr appt tomorrow and if she hasn't delivered by Wed @7am, they will be inducing her on Wed. Praying that all goes well...
((HUGS))
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in the hospital again ladies. Breathing issues. Went from my PC office to ER by EMS. On the IMCU floor. If you'd like to know which hospital ... PM me.
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Holy Cow, Holli! One step forward, two steps back. So sorry to hear you are not only dealing with LE issues, but with breathing as well. If memory serves, isn't the breathing issues a result of side effects from radiation? Regardless, sending healing thoughts your way. Hugs to you and your family!
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Lots going on with our ladies! Roll call -
Candy - Best wishes for a speedy recovery from BMX. Sending good juju and prayers to you, your family, and your medical team
Holli - Ugh! LE and now breathing. Hang in there, girl! Prayers coming your way!
Cindy - Tough times, I know. Wish we could whisk you and hubby away to a wonderland of health and happiness (Calgon, take me away)! Hugs and Prayers!
Terri - Excited that you will have a new grandbaby soon! Oh....to snuggle with a newborn again!
Jen - How are the new meds? Any closer to reconstruction dates?
Zelda - Good luck with your Art Bra submis
sions! Rock the runway!!
Chaos - How is home? Must be wonderful being close to family. Love, love, love La Grange!
Kelsy - How are things? We haven't heard from you in a while.
Linda - Sorry I missed our last meet up. Hope to meet you soon!
I apologize if I missed anyone!
Are we ready for another meet up? Maybe in April or early May? Thoughts?
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yes. Breathing issues due to radiation pneumonitis. Now I'm wide awake while hubby is snoring because they have me IV steroids!!! Ugh. I just got off those nasty #%*+%#~!!!!!!
Here's my blog post. Please pray for my girls they were with me at doctor when it all went down....
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Where's Holli...
posted by Holli on Monday, March 16, 2015
Riding in an ambulance
Using a bed pan
Wearing a mask (bipap) that makes me look
like Darth Vader
Give up?.....
The hospital. Yes folks I am back. Too bad you can't collect frequent flyer miles for hospital visits.
Why am I here... (Trust me it isn't for the Darth Vader mask)...
I don't Think I really ever recovered from when I was sick in February (see pnuemonia, pnuemonia, pneumonia, ear infection). I got worse on Friday. Like my previous post... My temp went up over weekend. I started on antibiotics. I Went to primary care dr today and my Respirations were 45+ (Normal is 18-20), plus lots of wheezing. Soooo, they took me by ambulance (yes I said AMBULANCE) to the hospital. They are running tests. I am on the IMCU (or step down /intermediate intensive care unit).
My only regret is that Sarah and Grace were with me. I had to leave them at the doctor because they couldn't ride in the ambulance with me. The nurses were really nice. But the girls were so scared.
All I have to say is GOD BLESS MISS DEE!! Not only does she do amazing hair, but she is an awesome friend who loves my kiddos and they love her back. She lives close to the doctors office and she drove there to hang out with my babies until my hubby could get there. Not only did she do that, but she took them to get ice cream after. I will never be able to thank her enough.
Bronchotis? Pneumonia? Lung cancer?
No one knows. I just couldn't breathe. Lots of wheezing. I feel so bad that the girls were there with me. They were both crying.
I'm okay now as long as I don't move around much and I keep my Star Wars mask on. Im Much better than when I came in though.
Should know results tomorrow
Please pray for my children, my hubby, and me.
Thank you
Holli Edit
Vader mask
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Oh gosh, Holli. So sorry to hear of your setback...and that you have to be on those nasty steroids again! Hugs and prayers for you and your family. Get out of the hospital soon!
Linda, how are rads going for you?
Candy, hang in there! Please keep us posted on your progress when you are up to it.
Vicki, I was just thinking the same thing. Hopefully, some of the newbies can do our next meet-up.
Watching the grandbabies for a while today while my DD goes to her Dr appt this afternoon. I kind of hope she goes into labor tonight...but it's not up to me, is it?!:) Can't wait to meet her!
((HUGS))
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Holli - we have never met but you are in my prayers for a speedy and FULL recovery. You have been thru so much -hugs to everyone - candy
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Candy, sending prayers and hugs to you today!
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Thinking of you Candy!
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Hi ladies!
I heard from Candy via text and she is sounding AWESOME!!! Here is the 411:
Surgery went well. She was out of surgery and in her room by 1:30 PM. Nurses treating her well. Pain meds kicking in and working very well, thank you very much! Looks like Candy will be released tomorrow afternoon. How awesome is that? She is grateful for everyone's prayers and well wishes.
A rep from BCRC was suppose to stop by and bring a heal in comfort shirt and those wonderful underarm pillows. She didn't make it. So Vicki aka Momma Bear will be calling first thing in morning and find out what's up. Come heck or high water....we will get Candy the shirt and the pillows! You don't mess with Mamma Bear and her BC friends!
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Holli -
How are you? Still in the hospital? You rock the Vadar look, by the way! Not everyone can pull it off. Prayers still coming your way!
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- mamma bear go get candy those pillows more than one. Three is a good number. I used them in the carbut they are awesome at home for arm positioning. I have mine at the hospital now. A neck pillow rocks too.
- Blog time for am update. Too much energy to type things more than once. Just had another bad breathing episode. Better now.
----------------Still Heeeerrrrreeee....
posted by Holli Barrett on Wednesday, March 18, 2015
I still in the hospital on the IMCU floor. Hoping to get moved to a regular room tomorrow...maybe.
I'm still coughing. It seems like if I'm off the bipap machine I can only last about 8 hours before I have a cough/breathing episode. My chest and right shoulder hurt sooo much.
I had a HORRIBLE day yesterday and last night. Now we have been ABUNDANTLY blessed with all of the healthcare providers we have had. Especially here at Seton. Liana, Will, Sarah, Tracy, Kristina - thank you for your care and humor and beautiful spirit. But more importantly for Listening to your patient with kindness and compassion. That is a gift and an art that we are quickly losing.
But the nurse practitioner yesterday was so stoic and so judgmental (for lack of a better word -and I am being nice) .... Ugh. I had 2 pretty series breathing "episodes" (again for lack of a better word) that could have either been avoided or lessened if her pride and "attitude" had not gotten the better of her. Maybe she is new at this... She did mention not liking snot and yet she is working with a pulmonary physician?? Maybe she had something happen before. But I'm so upset about the whole thing I don't know what to do about myself. I want to post the whole story, but need to check with Ronnie first because he says I can be overly honest on here. But I thank God Ronnie stayed withe last night. We got a few things settled and hopefully won't have any problems they rest of out stay.
I know many of you read these and don't always post directly on here but rather email, text, call, or pray, or visit. I am extremely thankful and overwhelmed by all of you.
Please continue praying. Pray for safety and peace for my children who are scattered diffetent places right now. Pray especially for them to be in the protective coverage of angel wings (and pray I can not worry and let God take care of them as I know He will). Pray for rest and peace for Ronnie. Pray that God helps him find a way to have a shorter commute and more peaceful stress free days while he provides for our family.
Pray for the doctors and nurses caring for me. Pray my lungs are healed completely and that this isn't part of my new "normal" as so many have told me here.
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Holli -Thanks for sharing your post. My heart is breaking for you and your family. I know God and his angels are watching out for your family and your precious daughters. Still - they must be very worried about their Mom and I am sure they miss you terribly. Bless your husband for being so stoic and being at your side.
I refuse to believe that this is your new normal....just a nasty speed bump in your road to full recovery. Hang in there! Mustering up as much good juju and prayers coming your way.
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I all. Candy should be home by now as she was hoping to be released this afternoon. Bcrc came through with the goodies this morning. Thank you bcrc! Received a text from candy this am and she is,sounding really good. I am sure she will post when she rests up a bit.
Note: I look back on me Facebook and blog posts after getting out if the hospitsl. They are kinda goofy. It was obvious that I had some nice drugs!
Hoping everyone is doing well!
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Vicki, thanks for keeping us updated on Candy.
Candy, I hope you're doing well!
My 6th Grandchild was born on Wednesday evening weighing in a 7 lbs, 10 oz. I have to say, I think she is adorable! Her brothers are in love with her.
((HUGS))
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Nothing better than holding a brand new baby!:))
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She is beautiful! I want one!!
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LOVE LOVE LOVE SWEET BABY GIRL!! Congrats. Name?
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Thanks! Her name is Emery Rhyan.
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RHGSR - I am new to this thread and site for that matter. I just wanted to say I was touched by your prayer.. I will pray for you and family. *hugs*
Keepthefaith - your grandbaby is beautiful!
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Thank You all for your prayers!
My hubby went home to be with the Lord on Monday surrounded by family.
Family and friends have ministered greatly to us greatly these past days. Together we completed his landscape design for the front courtyard and held his Celebration of Life there yesterday. It was so sweet, I know he was pleased. The sharing warmed my heart.
Reality will hitTuesday when the last of family flys out.
Have weeks to wait for burial at Riverside National Cemetery, but then I will be able to return home.
The Lord has been good to us and I am thankful for His provision and care.
And thankful for Yall and your care and love for each other!
(((Hugs)))
Cindy
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