Starting Chemo in December 2013

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited October 2014

    Michelle, so glad about the clean mammo for ms. Righty. That must have been a big relief. Now you can go into surgery knowing it will "just be surgery" unlike last time. Why is there pain in the R side, any answers from the doc?

  • missy6758703
    missy6758703 Member Posts: 218
    edited October 2014

    They said that the pain could be possibly from the fact that I lay on it all the time when i sleep, or possibly from my port placement.  They really didn't know and I think that is why they wanted the mammogram.  I was so scared! I also will be starting physical therapy for the scar tissue and cording that i'm getting under my left arm and boob....always something! 

  • kimie06
    kimie06 Member Posts: 215
    edited October 2014

    I dont know where the time is going I feel like I just posted

    I had a bleeping bleeep day, I dont even know why, I really dont even have a reason., but seriously I wasnt even fit to be around.

    Holli I am so happy to catch up on your posts and read that despite all the on goings that things appear to be ok, enough already, my gawd.

    DJJ -  you need to sneak a selfie of you and hard chest on here, lol, he sounds interesting !! actually you are on a date right now.....bow chick a bow wow. !!!!! 

    Michelle - hope you are recovering well

    well next on my list in a tele conference with the hospital that did my genetic testing, I find out on halloween about the BRCA result, only had the test done back in June... take long enough? fawk.  Cripes I am praying for a big ole negative.   I am off for more genetic testing soon on my heart, they think my brother (the one that passed away) may of had a genetic connective tissue disorder, myself and my kids seen the cardiologist last week and all looks good he just wants to see  if I carry the gene.  

    I also have a scan coming up in november, remember the nodule in my lung that they told me about at my last chemo, well its soon time to have that rechecked.  They said it has the likelihood of a granuloma which is totally normal, praying thats the case, but thats not till November, which I guess is right around the corner.

    well I could ramble on ... and on.... 

    muah

  • RHGSR
    RHGSR Member Posts: 774
    edited October 2014

    Hi ladies. I'm copying and pasting from my blog here. I'm so tired and this seems the easiest way to keep y'all updated. The first post is from Thursday. And the second is from today. Finally got a little good news today....

    -------------10/23

    I know exactly what I was doing one year ago today. I was waiting for a phone call from my breast surgeon. My mother-in-law was at the house. Ironically she's here again today but for different reasons. 


    I believe the phone call came in after lunch on October 23, 2013. It was the call that confirmed that both my biopsies were positive for cancer. It didn't really affect me too much. Like I said before, I knew on October 16 that I had cancer. I wasn't being pessimistic... But realistic. My mammogram was a BiRads five category. This meant that I had a 95% chance of what was seen on the imaging to be cancer. But I was also there when the radiologist came in to tell me that my mammogram looked suspicious. I could see it in his face. He said he hoped that he was wrong. And I know he truly did hope that he had been wrong in reading that mammogram.

    So when the call came in on October 23, 2013; I didn't cry. I had already cried on October 16. But I know that this call affected Ronnie a lot more. He had told me that he was holding onto that 5%. And the phone call hit him really hard.

    Like I said before, I'm just frustrated that I'm not farther along in the healing process physically and emotionally then I thought I would be by this time. But enough about that...

    I do have some PRAISE! I wasn't supposed to get into see a pulmonologist until October 31. I made the appointment yesterday morning with the pulmonologist that was not named Dr. Dallas but Dr. Morrison instead. Imagine my disappointment as I was so tickled about seeing Dallas in Austin. But by lunch time I was called back and Dr. Dallas ironically had had a cancellation for today at 2:40. Maybe I shouldn't say ironically. Because I know I've had so many people praying for me that I just have to say it's a total God thing that we were able to get in to see Dr. Dallas, in Austin, when he was booked out through December. So instead of getting my scan today, I saw the pulmonologist and will get my follow-up scan tomorrow. A lot hinges on that follow-up scan.

    My pulmonary function tests at Dr. Dallas's office are within normal range. My lungs sounded good. And my oxygen saturation was within normal limits. However when they tested my oxygen and heart rate when walking, my oxygen dropped a little bit but my heart rate shot up to almost 170. This is very high. I started to feel dizzy, And faint, and weak. This is what normally happens to me during the day trying to keep up with three children. And also causes my shortness of breath. So they told me I needed to slow down. I laughed at them. And ask if they knew that I had three children, one that was two years old!

    The pulmonologist feels that I am deconditioned. That having chemo within six weeks of surgery, radiation within three weeks of chemo, then radiation pneumonitis within three weeks of finishing that, was just too much on my body. Then with the illness a few weeks ago it was just more than I could handle. The pulmonologist also thinks that being on the steroids for as long as I've been on them that the risk and side effects of them are now starting to outweigh their benefits. That the side effects of the steroids are beginning to cause more problems than good. So depending on what my scan shows tomorrow, if my lungs have improved I will start to decrease the steroids more rapidly at 5 mg per week. If the scan shows no improvement or worsening in my lungs then that's going to be a whole other story. So let's pray for improvement on my scan tomorrow so that I can get off the steroids and hopefully start working towards getting back to my old self again or at least a better version of my old self.

    I still have 3 surgeries I need to have and I can't even start to think about those until I can get over this road block.

    ---------10/24

    The pulmonologist called as I was pulling back into San Marcos from getting the follow up CT scan. Talk about being on top of things!!

    The CT scan looks stable with even a small amount of improvement. I guess I had pneumonia on top of the pnuemonitis. Since the lungs are stable and not worsening - it confirms that this isn't associated with any reoccurrence of the cancer. Praise God. So we are heading in the right direction now... Just slowly.

    The plan is to get me off these steroids as quickly as allowably safe (you can't just stop cold turkey). Tomorrow I will begin decreasing 5 mg at a time every week. So I'll go down to 35mg tomorrow for a week, then 30mg for a week , 25mg.... You get the picture.

    Hopefully, my side effects will begin to decrease and I'll start feeling better as i come off these. As of right now, I'm still having side effects - insomnia, shortness of breathe, pain with breathing, all over general pain, fatigue, neck pain, back pain, weakness, arm tingling/numbness, dizziness.... And on and on.

    But like I said we have taken a step in the right direction (albeit a small one). Please pray we continue to move in that direction and that there aren't anymore set backs. Please pray I stay healthy and avoid any other infections. My immune system is still compromised as long as I'm on the steroids. Also pray that I will be able to have at least one of the 3 surgeries I have left before the end of the year if it is Gods will. Pray for our insurance issues, peace for Ronnie and the kiddos, a safe trip home and rest for my mother in law, and a way for me to gradually build my strength back up without my heart exploding - ha ha!!

    -------------
    Love you all!! I couldn't be going through this as well as I am without all the love and support from each and everyone of you!! 

    Holli :0)


    Comments

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited October 2014

    Holli, that is such good news. Tapering the steroids faster is great.   

    Kimie how can it take that long for the genetic test results?  Prayers for negative results on this and any cardiac issues.  Scans are scary things. We want to know the results but at the same time fear the results.  Hopefully you lung nodule is a plain old granuloma.  

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited October 2014

    Wanted to share my yoga class meditation card for today. Hmmm...

    image

  • jbokland
    jbokland Member Posts: 890
    edited October 2014

    truer words never spoken 

  • DJJ
    DJJ Member Posts: 229
    edited October 2014

    Michelle, yay on the mammo.  The surgery will give you piece of mind and that's all that matters. 

    kimmie, WHAT????? That is way too long!!!! Especially for what they charge! If I remember correctly I got my results in a month.

    Lisa, that's so nice.

    I had date two last night and it was awesome.  He's a funny man and keeps me laughing.  We got more intimate in our conversation but it just didn't seem right to bring up cancer.  I was having too much fun.  So last night I got kissed.  The first time in a long long time.  It was nice and since he's so tall and I was standing on a curb I of course had to lean into him and put one on my hands on his chest, you know, just to balance myself so I didn't fall off the curb and YUP it's exactly what I suspected, his chest is carved out of stone! As he was kissing me my mind was racing thinking "WOW this is so nice", "he's a really good kisser" and then "I can't wait to tell my ladies".  Yes ladies as I was kissing a HOT man I thought of you Happy Hee hee, I'm so glad I have my ladies.  Then as I drove home emotions hit me and I sobbed the whole way home.  Not out of sadness but out of happiness because I'm ALIVE to kiss a man. I'm ALIVE to do whatever I want.  How amazing is that! What a gift we've been given! Tomorrow is date three.  We're having brunch and spending the day together.  Maybe tomorrow will be the BC conversation...maybe not. 

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited October 2014

    DJJ. Great that the second date went so well. 

    Did the 5 K walk for Striding Against Breast Cancer today.  Had a great turnout and I walked with another survivor and a friend.   The weather started put cloudy and cool but the sun came out half way. Here are some pictures, I am wearing three layers of clothes so a bit more .plump then usual. Of course Hayley is rail thin also. 

    After I came home I cleaned out gutters so between walking 3+ miles and going up and down the ladder my legs are screaming, Took 3 advils and settling down now. 

    The start

    image

    The finish 

    image

  • RHGSR
    RHGSR Member Posts: 774
    edited October 2014

    This tree was either blown over or hit by lightening several months ago. My hubby has been trying to burn / chainsaw the remaining trunk down. But it is starting to try to grow ( see the green leaves coming out of the left side) despite the odds being against it. It makes me so sad that My hubby is burning it down. Maybe I just appreciate the "fight" it is giving :0).

    image

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited October 2014

    Barb,you look beautiful. Nice workout today!

    DJJ, I'm smiling as usual with your post. Here's to many more years of kissing and being kissed! Beautiful. Thanks for sharing with us and thinking of us during the kiss, hmmm maybe you need to focus on that rock hard chest and not falling off the curb! But glad we were "there with you". We can all live vicariously through you, ok? Date 2and 3 back to back. Sounds great.

    Enjoy the rest of the weekend you awesome warriors

  • RHGSR
    RHGSR Member Posts: 774
    edited October 2014

    I am loving this new song by Casting Crowns. I wanted to share it with you ladies just in case you might love it too ...

    http://m.youtube.com/watch?v=KxLoRuQiy1g

  • jbokland
    jbokland Member Posts: 890
    edited October 2014

    DJJ you go girl!  Kiss away and relish in that intimate connection!  

    We had our Srtides walk today. 60,000 people!!!   I could not walk because of my freaking foot but we passed out about 400 free Saddy Head pink ribbons.  We met hundreds of wonderful people with inspiring stories! Great Day!

    image

  • Carol99
    Carol99 Member Posts: 116
    edited October 2014

    whew!  I just caught up, seems like we're all doing well & moving in the right direction.

    Holli, you write so well, I was feeling sad when you were feeling a bit behind, I'm happy to know you got some answers and will be off the roids!  I hated those.

    Love the walk pics, I'm making my peace with pink, my dd and I are putting a team together for the Avon walk in May 2015, she did it last year, it will be fun, a bunch of her friends (20 year olds, great nrg) & mine!

    My dh & I just got back from San Diego/ Sonoma last week, it was great!  I love wine country, Kim, you are so lucky to live in such a beautiful part of the country!  Great food, GREAT wine!  The vibe there is so relaxed, I can't wait to go back!

    I had a bit of jet lag & got a UTI when I came back.  Too much wine, not enough H2O.  But, I had a headache for a couple days, I immediately think, brain cancer.  really?  When will the PTSD go away!!  I can still go to a very dark place.

    I would love a get together, Vegas is a blast!  Chicago maybe an option too?

    What date are you all using as your anniversary date?  I think I'm going to consider when I was told I was cancer free,which is my BMX date, 11/4 as my date.

    Mikes girl, im with you, I have a new energy to do everything (except housework). Haha, just fun stuff!

    Carol

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited October 2014

    JB what a tremendous number of people at your Striders event. We had about 150-200 I would guess. Not too bad for a small city In the outbacks of PA. 

    DJJ waiting for the report on date #3. 

  • jbokland
    jbokland Member Posts: 890
    edited October 2014

    I think I will use my BMX date, as well.  

    Wondering if anyone can relate to what I've tried to explain to my family.   When I get fatigued, I feel almost buzzed...weird feeling in my head like when I'm drunk without the impaired thinking.  

  • kjfromca
    kjfromca Member Posts: 283
    edited October 2014

    Hi ladies - 

    I had a nice long post written up yesterday, but when I was trying to downloaded pics, I lost it.....

    Patti - When are you putting your house on the market?  Are you planning on staying in the same town?

    DJJ - Thanks for sharing your date with us.  Mr Six Pack sounds awesome and the fact that he makes you laugh, is a plus!

    Michelle - That must have been a very hard decision to go through the MX again.  What are they telling you will be your recovery time?  Will they be putting in a TE or implant?  Oh by the way, my TE is getting harder and tighter, my PS keeps telling me that I have to wait until at least March to replace. 

    Michelle's upcoming surgery brings up my next question ladies, Saline or Silicone breast forms?  My PS wants me to start thinking about which one to go with.

    Holli - I am so glad that your lungs are improving and no cancer, I pray for you all of the time.    I have been having some congestion and tightness in my lungs lately, I will be dealing with it this week.  Please keep me in your prayers... 

    Jbok - What a wonderful crowd.

    Barbara - Thanks for sharing your pics, you look great!

    Carol - Glad to hear that you had a great vacation with you DH.   The battlefield of the mind, if only we could get rid of those dark places..... I am using 10/31 as my anniversary date.  It's when I had my MX.

    Have a great day ladies.

    Kim

  • jbokland
    jbokland Member Posts: 890
    edited October 2014

    Kim. I am going with silicone.  My ps advised to achieve the shape I want. Also saline can leave flat spots when you lay flat as the liquid shifts 

  • missy6758703
    missy6758703 Member Posts: 218
    edited October 2014

    I think i'm doing the silicone as well and yes, it was a very hard decision to make but one I feel like I have to do.  It will be done exactly a year minus one day from when i had the MX done.  Didn't plan on it being like that, but it just is.  My PS said he will be putting in the expander on that side and then I will get the actual implants in about 2-3 months.  I am almost completely out of PTO and so I am going to only try and miss one week of work after the surgery.  I hate this and know my body needs longer to heal, but i also have bills to pay and being a single parent with 2 kids in college I just can't afford to do it any other way.  I work from home and just sit at a computer so I'm just hoping it will be ok.  I sure wish I would have made a deal before going in that if there was any lymph node involvement to just take them both! Ugh.  :(  

    I am working today and when i get off, i'm planning on painting my bedroom.  I want a room that is BRIGHT and full of life for when i get home from my surgery....figured this is just what I need! :)

    Happy Sunday....loved the pictures of the walk.  I also find myself going to some very dark places.  My hip hurts, oh god, its in my hip....it never ends!  I get a slight headache...oh shit, its in my brain.  I cough, wtf its in my lungs.  My doctors at Mayo put my on Effexor....supposed to help with these damn tamoxifen hot flashes and also help with some of the depression i've been having....lets hope so! 

    hugs and love to you all!

    Michelle

  • Carol99
    Carol99 Member Posts: 116
    edited October 2014

    I also have silicone, it's def. a work in progress, I had direct to implant nipple sparing but in Sept. I had my 4th surgery, my ps put bigger implants in.  I'm happy with them, but it takes time, almost there.  My dh & I joke , my ps did the first face transplants, he's been on TV and everything but can't seem to get my boobs right!.  

    Michelle, I've been on Effexor for about a year, it does help, I hope it works out for you.

  • RobinLK
    RobinLK Member Posts: 840
    edited October 2014

    Michelle, I started Effexor after we had to say goodbye to Spirit. It has definitely helped with both the depression and the hot flashes. The flashes are not completely gone, but they were drastically reduced.

    I love the walk pictures! I see them and want to do them, but am not there yet. I like the a Relay For Alice and have done that in the past. Thought about doing the one here in Surprise, but just wasn't motivated enough. I think it is related to the dark place and not feeling finished. 

    I need to let my BS know that I do want her to do something with my cyst. It hurts when I lay on it, and I am a stomach sleeper. I need to ask her if she has any idea why I keep developing these lumps and bumps on my scar. 

  • Carol99
    Carol99 Member Posts: 116
    edited October 2014

    oh. btw, Jbok, great article in the huff post, contgrats!  mj helped me too.

  • kjfromca
    kjfromca Member Posts: 283
    edited October 2014

    Thanks for the advice ladies, I do want my breast shape to hold.  It's going to be hard enough to get the right breast to match the left....gravity sucks!  

    Love all your pumpkin pics on fb.

    I see my BS today and will be dealing with labs and lungs this week.  I will keep you posted.  I feel fine this morning by the way, the congestion comes and goes.  

    Jbok - Florida needs to get with the program.... It is nice to have the option of getting medical marijuana if I needed.  Glad you're advocating for it!

    Have a great day,

    Kim

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited October 2014

    I put this on the hair thread but figured I also had to share with my bff's. This is what's happening on top of my head! It's trying to grow longer but just keeps curling up in perfect little curlicue circles. This is after air drying it only and not touching it at all. It's really soft, I leave in a little conditioner, that helps as curly hair is dry. Someone recently asked me how I got it this way and thought maybe I put in little pin curls, nope chemo lol! I like it about 50% of the time. People think it looks really cool and chic, I'm not sure, looks like a real poodle's head

    image

  • jbokland
    jbokland Member Posts: 890
    edited October 2014

    lisa.  That's amazing!   The curls are so....deliberate!!

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited October 2014

    what is everyone's reconstruction plans? And when?

    I want gummies for implant and probably not until next year during a school break.  No more time off work

  • jbokland
    jbokland Member Posts: 890
    edited October 2014

    Jodi,

    I am just refilling the TE's after having to deflate for rads.   I plan on having the recon about Dec. 1.

    My doc has his own new techniques of doing a lat flap but not having to do a back incision.  He reaches in from the extended mastectomy incision and pulls around a piece of the muscle.  

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited October 2014

    JB- same thing here!  Refilling after rads.  I am die for two more fills but have not gone back.  Last fill was really hurt:(  I have 400 now but suppose to get to 600.  I could not bring myself to go back for another fill.  It is not painful now, so I might have needed extra time.  

    Very interested in that lat procedure!  Mine was planning on the back incision.  Amazing what they can do.  I know it is not perfect y'all but we are so lucky to have options.  Heck we are just all blessed period lol!

  • jbokland
    jbokland Member Posts: 890
    edited October 2014

    I am at 600, the last fill was 150cc and it knocked me down a day ( funny how it makes you just icky all over). I'm supposed to go for another 150 on the radiated side. UGH!   I just don't know.  I know it sounds huge that I am only 5'2 but it will give me a C cup. Look. Sharing my pre-rads naked truth because I lost all sense of modesty through this. 

    image

  • missy6758703
    missy6758703 Member Posts: 218
    edited October 2014

    Jbokland,  that picture is one of the most beautiful, raw, real, honest, inspiring and sexy images I've ever seen.  yes, i said sexy!! 

    I have never had to go in for a fill,  they did all mine one week after surgery.  I think i mentioned this before how my PS does the expander process....he initially filled the expander with air so after surgery, the healing process went very well because they were so lightweight and not painful.  When i did get the saline put in a week later they sucked out the air and filled the expanders.  I have 570cc's.  I've lost all modesty as well so will also post a picture.

    image

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