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June 2017 Surgery Group

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Comments

  • susanga
    susanga Member Posts: 66
    edited June 2017

    Hi Ladies,

    I read each post but as said by another I am losing track of names but promise that I send healing thoughts and prayers to each of as I read. This walk is so different formall of us yet in a core way we all understand. I LOVE The marathon analogy. It doesn't matter how fast we go only that we complete it. The mountain lion story was the best. I know that we willl all heal well just different roads. As a health care professional who used to prepare chemo drugs for women daily I am so grateful to be in this time frame where things have gotten so much more effective and manageable. I can still see so many avenues for needed advocacy. Maybe that is in my future.

    I'm wrapping my head around the fact that for me healing is not linear and straight up. It reminds me of an old hymn called Bless the Crooked Road. This week I am having pain and had to begin hydrocodone. Now I'm looking for some dynamite for the bowel issues. So it goes.... However, very grateful for the 8 hou sleep thanks o meds.

    Hugs for those still facing surgery and those facing chemo. We will be there for you. I feel like I have a special place in my heart for all of you

  • illimae
    illimae Member Posts: 5,739
    edited June 2017

    Welcome Daphne and Toughiebird!

    Leatherette, SE's are so varied but I never had nausea, never even opened the prescription bottle. The toughest things for me we're finger/toenail damage and pain and taste bud issues. My nails lifted and got infected, I have a steri stip on one because I keep catching it on things and worry it'll tear off :( My taste buds got back to almost normal a couple weeks after chemo ended. For two days after chemo everything tasted like ass sweat, all I could tolerate was ramen noodles and sweet stuff, it got better but nothing tasted as good as I know it should and I ended up losing 25lbs because of it. Of course I had weight to spare so it worked out but not enjoying food was annoying and made me sad/angry some days. You'll do fine, just another hurdle in the BS cancer race :)

  • RRusso23
    RRusso23 Member Posts: 25
    edited June 2017

    hi everyone. I haven't really posted anything through this journey of mine but I've read a lot of what everyone has said and been though and it's helped me a lot.

    I was diagnosed with stage 2a triple negative IDC in November 2016 and after 5 months of chemo I had lumpectomy surgery on May 30th. When I went for my follow up my BS said my cancer went to a stage 0 however my margins were unclear and had DCIS cells sporadic through out the tissue.

    2 weeks later on June 13th I had a total Mastectomy of the right breast with an expander placed for reconstruction . Thankfully no lymph nodes were affected. I still have a drain and have to see my surgeon on Monday for post op. I'm hoping the drain comes out then

  • tara17
    tara17 Member Posts: 150
    edited June 2017

    SusanGA referred to losing track of names --- i too see that this group has grown with so many ladies havign surgery this month and so many new names. Sometimes, i am just amazed by how common this disease is and see how many lives it affects. I wish doctors could tell us why it occurs and affects so many amazing women in the prime of their lives

    At the same time, i am amazed by the grace and courage and sheer awesomeness of each lady posting here --- the honesty of admitting fears and doubts and worries allowing us all to participate in our shared humanity and steadfastly moving forward in this, the most difficult time of our lives with the most difficult decisions --- each post helping the people who read it, each tip giving each one of us ideas on our own care . My wishes for speedy healing and inner strength to face and enjoy each day are with each one of you. What i wishfor all of us, is to also have happiness and joy and dreams for the future every day even as we face these times

    Xoxo

    Gentle hugs to all

    Tara

  • SBKH
    SBKH Member Posts: 104
    edited June 2017

    Good morning, ladies -

    Welcome RRusso23, Toughiebird, Daphne77, and Candyapple.

    This was a big week for surgeries - I'm reassured to see those of you that have checked in and grateful that you are through it.

    Nightcrawler and Elfmcg - praying for an easy surgery for you two Monday with skilled doctors and a great medical team.

    JenRuns - I'm so sorry to hear about chemo. It sounds like you have a pretty stressful job, too. Prayers for few side effects and for chemo to do it's job thoroughly and quickly.

    Legomaster - so glad you are recovering now from surgery! I hope you're home and comfortably resting.

    VL22 - praying for clear, perfect margins for you on 7/3 and no chemo.

    Leatherette - I can't believe you were out and about the day after surgery! But I admire you for knowing what you needed in that support group and not letting anything stop you from getting to it.

    Rlsteadman - hope you're feel less groggy and brighter today. Prayers for the rest of your recovery to go smoothly.

    Illmae - your emoji is great - how did you make it? I need a uniboob emoji!

    Candyapple - It's not technically outpatient - it's a 23 hour observation unit that most of us go to rather than being fully admitted. That's a good thing!

    Daphne77 - Prayers for good results!

    Toughiebird - I had the same thought about nursing care for the drains! My mom can't see well and my husband is NOT good with that stuff. My surgeon practically laughed me out of the room when I asked for nursing care. Apparently, it's super easy to empty and care for the drains. Several of my girlfriends did it - so maybe it won't be too bad! But, girl, I would take round the clock nursing care if insurance covered it. I'm a pansy about some things.

    Think that's everyone with something big currently happening - wanted you to know I continue to cover you wonderful ladies with prayer.

    I still have 12 more days of waiting... So ready to be done. But y'all make me braver.

  • SBKH
    SBKH Member Posts: 104
    edited June 2017

    Tara - I have wondered the same thing - how can this be so common? It's troubling. And why does cancer pick on such awesome women?

  • tara17
    tara17 Member Posts: 150
    edited June 2017

    SBKH and toughiebird --re drains --i was terrified in the plastic surgeons office when i saw them, but ultimately they were ok. I did have help but I think that it woudl be possible to do it on your own too with the help of standing in front of a ful length mirror to see what you are doing will give you a sense of doing it right -it is definitely not as bad as one fears!! You can definitely do it on your own if it comes to that.


    SBKH --- yes, its really troubling how common this is! What is going wrong that this happens? I am vegeterian, ( have been since i was 18), dont smoke, am physically fit and thin, very active, barely drink --i couldnt fathom what went wrong. All i can do is chalk it up to bad luck. And i have very dense breasts --so maybe its the density ? But for a disease that calls for so much treatment, it woudl be nice to have more knowledge about a reason. The doctors do pay attention to vitamin D , so i suggest thateveryone get their vitamin D level checked if not already done. But i am sure there are plenty of ladies with good vitamin D levels who also had this --so its troubling to have no answer regarding the reason.

  • SBKH
    SBKH Member Posts: 104
    edited June 2017

    Wait -what? Vitamin D can cause problems? I've been chronically low in D due to absorption issues. My dr. occasionally puts me on a prescription for it. I'm also severely anemic and low in B12. I had no idea there might be a connection and have been pretty lazy about supplementing! Fwiw - I have dense breasts too.

  • tara17
    tara17 Member Posts: 150
    edited June 2017

    SBKH --the 12 more days of waiting are way worse than the actual surgery and after care. Fill them with prayer and walks and self care --this is the one time in our lives that we should all prioritize ourselves and our self care

  • tara17
    tara17 Member Posts: 150
    edited June 2017

    well i dont think the research on vitmamin D is concrete in terms of establishing any relationship betweeen breast cancer and vitamin D ---so i want to be verycareful that i dont imply that It is causative -- but there is some research saying that vitamin D is important in the functioning of the pathways in our cells . Its easy enough to supplement vitamin D --so making sure your vitamin D levels are in a nice good range takes that out of the equation

  • KimE
    KimE Member Posts: 34
    edited June 2017

    Hi Candyapple:

    My surgery was through Kaiser and I stayed there for 2 nights although I probably would have preferred to be home. Sharp is a very good hospital, one of my other surgeries was at the Outpatient Pavilion and I loved the care there. Good luck with your surgery and make sure to stay on top of your pain medication. I'm only three weeks out and haven't been able to wean myself off of the Norco. I've been trying to do more each day with less pain meds but sometimes do too much which leaves me physically and mentally exhausted to the point where crying is my only relief so take things easy and allow people to assist you (something I haven't mastered yet).

    Kim

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited June 2017

    hi touchibird, I had mastectomy on my cancer breast last August and just had mastectomy on my good breast 2weeks ago along with reconstruction on both breast. I think you will be ok doing it by end of summer but yes try and do it as soon as u can to give u peace of mind. Good luck

  • teaspoons
    teaspoons Member Posts: 9
    edited June 2017

    Hi everyone. It's my first time posting. I was diagnosed in late April with ILC in my right breast and then added an ILC diagnosis in the left breast and at least one left lymph node in May after an MRI and second biopsy. I also found out I have the BRCA2 gene mutation. Needless to say, I am having a bmx on June 30th with left axillary dissection and right sentinel node biopsy with tissue expanders inserted as well.

    (Pretty sure I don't have all of the lingo down yet.)

    Since my diagnosis, I have been keeping super busy - youngest daughter graduated from high school, graduation party, college orientation, wrapping up work projects, etc. I have generally been avoiding thinking about cancer, surgery or all of the coming nastiness. But now that all of the fun stuff is over, reality is hitting me in the face.

    In general, I'm a pretty practical, organized person, but after looking at the "preparing for surgery" thread, I'm pretty sure I'm totally unprepared. I haven't gathered anything it looks like I'll need and not sure where exactly to start - guessing I will be winging it a lot.

    Anyway, trying to handle it all with as much strength as possible and not breakdown emotionally. I want my kids to continue on with their summer and college plans - I don't want anyone sitting around feeling sorry for me. It's just not what I was expecting at the empty nest stage of my life.

    Take care of yourselves!


  • tara17
    tara17 Member Posts: 150
    edited June 2017

    teaspoon --welcome to the club no one wants to join. I am sure that you will do great with your surgery --sounds like you are really coping well with staying on top of all yoru activities. At the same time, its ok to be human! Its ok to expetience all the human emotions ---this is a signficiant moment in life --take care of yourself

  • Toughiebird
    Toughiebird Member Posts: 21
    edited June 2017

    Thank you so much for the comments and sharing your experiences. This is so helpful to me - i have this damn chek2 mutation - that there little research on - though all the drs are saying - "If you did not have the chek2..." but it seems to cause them great mystery and worry and everyone said 'woth it, pbmx is certainly a viable option and reasonable" The genetic counseling, while scary - actually relieved me so i can put it all in context - so again - information is powerful and i thank everyone on this site and send only amazing, good, wonderful light everyone's way. My breast is still healing for the lumpectomy 9 developed a hematoma - which probably has to be drained a 2 nd time this week - so sore). does any one know - if i have the pbmx - theres no dnager now in the time frame beween may-August or Sept? The surgeon said they got out everythign with clear margins?

  • legomaster225
    legomaster225 Member Posts: 356
    edited June 2017

    Hope everyone is doing ok. The pain from my BMX is manageable. Yes, it is sore, tight and achy but I was not prepared for the back pain. I'm not sure if it is from laying in surgery for 6 hours or just sitting/laying so much yesterday and sleeping in the chair. I can tell I'm guarding and tensing up so I have to remind myself to relax. Feels better when I walk around which is a pain with the drains and power packs. I guess I should have prepared with more core work before surgery. Hang in there ladies. Prayers for everyone. Heart

  • ouray17
    ouray17 Member Posts: 39
    edited June 2017

    What an awesome group of women with GRIT: Guts, Resilience, Initiative, Tenacity (Thank you always, SBKH for starting June 2-17)

    Welcome RRusso23, Toughiebird, Daphne77, and Candyapple.

    Nightcrawler and Elfmcg - big day Monday - praying for you both and your medical team. It is better on the other side!!

    JenRuns - very sorry about the chemo, but you are very determined and will get through it. We have to beat this stuff!! Legomaster - so glad you are recovering now from surgery! I hope you're home and comfortably resting.

    Runnermom & VL22 & Leatherette - praying for clear margins. Still waiting on my final pathology. My husband & kids didn't realize that if they don't get clear margins, it means another surgery. One of my sons kept saying, but she said she took the nodes out & I'm like yep, but...Can't imagine having another surgery so soon. Fortitude.

    JMBG, SusanGA and Legomaster - wonderful to hear about your path report!!

    SBKH & Mucki1991 - Hang in there!

    Illimae - thank you for being our mentor and helping us through this.

    Tara17 - that was awesome! so to the point, but my mountain lion is going down!!

    Sorry, I've been out of the loop this week. Mom-in-law taken by ambulance with pancreatitis & pneumonia Tuesday, put in ICU, very touch & go, vent & feeding tube yesterday, unconscious. This afternoon, she suddenly wakes up and 2 hours later, the vent is out. It has been so stressful. I tried to get my family to let me go see her. Had 2 of 5 drain tubes taken out Wed. and talked with the Doctor, who told me to stay away as chemo will probably start in 3 weeks and I need to be well. So very grateful today!!

    Seems there is a lot of bc. Think our group is over 40, looked back at May & April - about the same. Medical Oncologist told me to get off refined sugar - completely - said research shows it causes inflammation in our bodies, which helps the bc to grow. That was the initial visit with her and at the time, both oncologists thought mine was so tiny 2, 3, 7 mm, that my lymph nodes would be clear & I'd just need one of those pills for 5 years. I smiled & nodded in agreement thinking if not in my lymph nodes, I'll cut back some - you know - I like sugar & spice & everything nice. Now that I know it snuck in those lymph nodes, sugar is outta here.

    Bought a sign this week: Attitude is the difference between an ordeal or an adventure. This is an adventure I never wanted to be on, but I'd never met such wonderful, caring, determined group with the same goal!

    Take care!


  • ouray17
    ouray17 Member Posts: 39
    edited June 2017

    Watched Gabriele Grunewald run the 1500m in the US Outdoor Track Championships Thursday. Had no clue who she was. Gabriele is 30, diagnosed with salivary cancer in 2009. It went to her thyroid so it was removed & she had treatment. Then, her liver. She sports a 13 in scar across her stomach when she runs. It's back again in 4 areas not operable so she starts her 4th round of chemo on Tuesday. If you need motivation, look her up. She continues to run and do what she loves in spite of the cancer. Amazing young woman!!

  • legomaster225
    legomaster225 Member Posts: 356
    edited June 2017

    I saw that too ouray17. She is an inspiration!!. To hold up to that level of running while going through what she is is truly amazing. Dragged myself off the chair after seeing her race!

  • RRusso23
    RRusso23 Member Posts: 25
    edited June 2017

    ladies who've had drains I have a question.. did you milk your drain every time you emptied it if there was fluid in the tubing, or did you let it work its course and only mess with it if it was clotting?

    Also what is everyone doing to keep from going crazy? I have a 10 month old daughter and it's killing me that I can pick her up. She doesn't understands either it's so sad. Thank goodness for my mom coming to stay with us

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited June 2017

    Rrusso23, hi. In regards to the drains no I did not milk mine every time. I just let it take its course but I did milk them just not everyday. Who knows maybe I should have. And I know exactly how u feel I have an active 3yr old and I hate not being able to do certain things with her or reach to get her certain things she want she from the pantry. I know this will soo me pass. It's great u have your mom to help out.

    Hope everyone else is doing well.

  • pulstk
    pulstk Member Posts: 6
    edited June 2017

    I also had my follow up this week, sounds very similar to JenRuns. Confirmed my IIIA staging with 5/7 nodes being positive after my BMX and Axillary dissection. The only treatment that changes is the radiation will now include my left armpit in addition to my left chest.

    I am healing quite nicely, at 8 days post-op I was able to get all 3 drains out, yay. I have been having alot of burning, shooting nerve pains as well as muscle spasms in my chest and neck, so i did get a script for Flexeril.

    The Dr. gave me some very simple, non strenuous exercises to increase range of motion, but still says not to pull, push, or lift anything over 10 lbs for 3 more weeks, then on to radiation.

    Continuing to pray for you all😚

  • RRusso23
    RRusso23 Member Posts: 25
    edited June 2017

    Hopfull2: okay I don't milk mine all the time either.. sometimes when I do I get a sharp pain in my chest. I'm hoping the drain comes out Monday at my post op visit.

    I'm hot and sweaty, want a real shower and need to find something better then this surgical bra they put on me in the hospital

  • tara17
    tara17 Member Posts: 150
    edited June 2017

    Ouray17 --how amazing and considerate and nice you are to continue to remember each person, especially in the middle of a family crisis. I am so glad that your mother in law is off the ventilator! May she continue to recover and come home in good health. You take care of yourself during this stressful time !

    I shall check out Gabriel. Grunewald --it sounds so inspiring

    Pulstk --glad you are healing nicely!

    RRusso23 -- I personally drained my drains twice a day and milked the drains before i emptied them . Thats what i was told to do. A tip is to take an alcohol wipe and milk the drains holding the wipe. That wipe allows the hand to slip down the drain easily and milk it

    Here is a video which I found online from sloan kettering which shows one person operation of the drains . Hope its helpful

    https://www.mskcc.org/videos/how-care-your-jackson-pratt-drainage-system

    As for me going through the tissue expander process now ---painful with the fills and muscle spasms . Anyone else in the tissue expander phase with the same issues?

    Continuing to send good healing wishes and all recovery vibes for good physical and mental health to all you wonderful ladies!

    Gentle hugs

    Tara

  • RRusso23
    RRusso23 Member Posts: 25
    edited June 2017

    Tara: I think I was on a lot of pain meds when the nurse went over my instructions with me haha! How were you keeping track of the drainage? I've been doing like this 8am-3pm 3pm-9pm and 9pm to 8am, but finally today I didn't have to empty it This afternoon

  • susanga
    susanga Member Posts: 66
    edited June 2017

    Good morning. I hope you are all doing well. Special thoughts for those with surgery this week. The waiting part is still the worst. I got freaked about lymph nodes because my surgery was two months after diagnosis but nodes were gratefully clear.

    I was given such little information about exercise and that was contradictory. My surgeon gave me a pamphlet which said lift arm over your head near the ear. Discharge from nurse said no more than 90 degrees. So I followed nurse and did exercises that were all below 90. Then at follow up, surgeon again said "get that arm up". So I started the climbing up the wall thing. It really doesn't hurt bad, it just pulls a little. My only concern is it clearly made the swelling worse under my arm. I'm curious if any of you are exercising. I am 11 days out and my drain was removed.

    Thoughts on cancer. I am low Vitamin D and now taking supplements. I have chronically high blood sugar as in pre-diabetes (worse since a few days before surgery-stress?). Always wonder if there is a connection. I stopped eating sugar and refined carbs over one year ago. I wonder.

    Sending prayers and healing thoughts to all. You have all helped me so much. Bless you.

  • illimae
    illimae Member Posts: 5,739
    edited June 2017

    Ouray17, I think you've given me much more credit than I deserve but I am happy if I've helped anyone in any way.

    All, I feel for you, seeing some anxiety and confusion regarding diagnosis and future treatment in your posts. I guess in some way I'm lucky, not many Stage IV folks even get surgery and I don't have to worry about becoming stage IV since I started here. I will tell you though, that chemo is totally doable and you are way tougher than you think. Live it up ladies :)

  • SBKH
    SBKH Member Posts: 104
    edited June 2017

    Susan - I'm getting the same contradictory information! It's maddening.

  • RRusso23
    RRusso23 Member Posts: 25
    edited June 2017

    I've been afraid to do anything until my drain comes out. I do my arm around a bit but not above my head or anything. I was just sent home with a folder that had exercise in it but no one went over anything with me. I just can't wait for tomorrow and my post op. I finally drained only20ml for two days in a row

  • Lula73
    Lula73 Member Posts: 705
    edited June 2017

    Onthe vitamin D topic-from the NIH website:

    Vitamin D promotes calcium absorption in the gut and maintains adequate serum calcium and phosphate concentrations to enable normal mineralization of bone and to prevent hypocalcemic tetany. It is also needed for bone growth and bone remodeling by osteoblasts and osteoclasts [1,2]. Without sufficient vitamin D, bones can become thin, brittle, or misshapen. Vitamin D sufficiency prevents rickets in children and osteomalacia in adults [1]. Together with calcium, vitamin D also helps protect older adults from osteoporosis.

    Vitamin D has other roles in the body, including modulation of cell growth, neuromuscular and immune function, and reduction of inflammation [1,3,4]. Many genes encoding proteins that regulate cell proliferation, differentiation, and apoptosis are modulated in part by vitamin D [1]. Many cells have vitamin D receptors, and some convert 25(OH)D to 1,25(OH)2D.


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