Starting Chemo in April 2014

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  • MommyQ
    MommyQ Member Posts: 117
    edited August 2014

    Jaimieh: My taste buds are off majorly today, too, so I feel your pain. Hubby and I went to Hardee's for dinner tonight, and the burger and fries tasted so bad that I only ate about 1/3 of each. The only positive to my taste buds being wonky for the last week is that I've lost 5 pounds! Unfortunately when the new taste buds grow back, I'll put that weight right back on by eating too much!

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited August 2014

    dang MommyQ sorry to hear about your taste buds also. I found your missing 5lbs even without taste buds. Grrrr. 

    So 4 days until last infusion. Yes. I am counting and one more trip to the Friday hell day. When I started taxol Thursday night into Friday was bad but by Friday night I am better. Now it's just that Fridays stink. They are horrible. My skin hurts, my lip cracks open, heart burn flares up, taste buds are off, I am grumpy and just down right miserable. So I declare next Friday my last Friday in chemo hell. If it wasn't he last one it would be time for a reduction because no one wants to be around me on Friday. 

    The really stinky part is next Thursday I have to shot a wedding before I hole up to get thru Friday. After all this time all I can think is I got this 7 days isn't anything compared to the 100+ that I have spent feeling off and just not right. 

    I hope everyone is recovering and those if us pulling up the rear of the group and finishing up taxol are doing okay. 

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited August 2014

    Fiotballnut how are you doing ??

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  • MommyQ
    MommyQ Member Posts: 117
    edited August 2014

    Jaimieh: Sorry my 5 pounds found their way over to you. Maybe I can take them back from ya next week. :) Hang in there. Only one more bad Friday to go and you'll be DONE!!!

    I'm recovering from my last chemo that was 9 days ago. Just starting to feel less fatigued today, and I can see my tongue starting to turn from white to pink again, which means taste buds are starting to come back! Next week should be fairly quiet and then I go back to work the week after that, just after Labor Day. By then, I'll have been away from work for FIVE MONTHS! Yikes. Gonna be rough, going back!

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  • Sunshine36
    Sunshine36 Member Posts: 88
    edited August 2014

    Hey ladies!!! Im here and I did it! My bilateral was done on wed!!! Surgery (incl the te's) was about 7 1/2 hrs, and most of the day is foggy to me! I spent just two nights in the hospital and was happy to come home. I was very pleasantly surprised how much range of motion (without pain) that I had!! I thought I wouldn't be able to use my arms at all! And as long as I take my painkillers on time, then the pain has been mild and manageable.  And justlike everyone hhere warned me, the drains are a pain in the !@#$@$! I viewed my bare chest and scars with my hub before each shower, and although hard to look at, the scars didn't scare me? The te's feel funny and when I lay back too far, like I have a sumo wrestler sitting on my chest

    And I heard the best words come out of my hubby's mouth when I was coming to in recovery.... my sentinel (and 4surrounding) nodes were clear. Thank you jesus. We cried happy tears for so many reasons at that moment. 

    Xoxo hugs to all

    Jen 

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  • linda505
    linda505 Member Posts: 847
    edited August 2014

    So happy to hear Jen - especially about he nodes!!  Also - here is something you to need to hear about healing "Just because you can doesn't mean you should"   Remember that most of the nerves in the area where you had the bmx are gone and therefore things that would cause pain during healing don't.  So limit your range of motion to a T-rex - don't lift your arms above your head and not more than 5 lbs.  You want the inside to heal nicely.  Also - eat as much protein as you can -helps with the healing!!

    image

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  • EverForward
    EverForward Member Posts: 242
    edited August 2014

    That's great news, Jen.  Last night I had an anxiety-inducing dream about my upcoming BMX, so it helps to hear that you are managing well. I'm sure knowing your nodes were clear makes it easier to rest and recuperate. I hope your recovery continues to go smoothly.

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  • Sunshine36
    Sunshine36 Member Posts: 88
    edited August 2014

    Linda - thanks for the chuckle!  They sent me home with a few short exercises to do at home while I have drains, and then a bunch more to start when drains come out (cant wait!)! Its hard sitting around while my hubs does everything,  but im trying to remind myself that I have to rest and relax! 

    Ever - girl, dont even sweat the bmx. Everyone here assured me that after chemo, this would be a breeze! And by no means would I call it easy , but I was pleasantly surprised how smooth it went,  how fab the painkillers work, and how I was able to view my bare chest without sadness, etc! You got this girl - 100%. Hugs!!!

    Jen

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  • writinghelps
    writinghelps Member Posts: 88
    edited August 2014

    Hi All,

    I read here a a lot but don't comment much (I'm actually a regular on the May board although it is much slower than this board so i hang out here more).

    I wanted to share my experience with pain and the BMX in case anyone wanted the option I was given. I haven't seen anyone mention it yet.. My surgeon inserted a sprinkler-like system under the skin that distributed a lidocaine-like drug over a period of 5 days. It was fantastic! I was trying to avoid the other type of pain meds (because i am a recovering alcoholic/drug user) so the BS and anesthesiologist had a pow wow and decided on this system.

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  • SharonDe
    SharonDe Member Posts: 222
    edited August 2014

    Jen - very glad your surgery (and results) went well.  Best to you for a quick recovery so you can keep up with your adorable kids.

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited August 2014

    Jen so glad it went well.  Funny I was told to move by my BS that I needed to take it slow and keep moving. My piece of advice is to move you arms while walking. Sounds silly BUT my shoulders hurt from holding my arms in a defensive position and not moving them. I was able to get my full range of motion back but it was a. PAin. 

    2 days before last chemo I am ready. :). I don't count herceptin and perjeta. 

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited August 2014

    Wendy that's a great system. They called them pain balls in NOLA. :)

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  • nancybel
    nancybel Member Posts: 81
    edited August 2014

    Wendy I also had the on que pain ball and it was wonderful. It helped the recovery go  much smoother. 

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  • Tinkerbells
    Tinkerbells Member Posts: 211
    edited August 2014

    hellooooo everyone! Back from a chemo vacation in the beach with the family! Was great to not think about chemo, appointments and the usual fears. 

    Glad to see you guys have eye issues as well- my eyelids are sticky and soooo dry - vision is all funky- hoping it comes around once chemo over.

    Today is my genetics appointment- not expecting much- large amounts of cancer on both sides of family but only one cousin with breast cancer. My father had kidney, lung and larynx and my mother had stomach .  We will see. At least my kids will have some info to refer back to down the road.

    Body aches? Oh yeah!!! My lower back has joined the party in a big way.

    Puffiness? Of course! It's hard to look at photos of me- my face is definitely puffy. Hoping that's one of the first things to go!

    Who's still finishing up? Footballnut - you done? Jamieh- last one Friday! Brigadoon- you know we are in your pocket every time you go. My chemo brain won't allow me to remember who else is lined up- please refresh my terrible memory?

    I have 2 more to go- Thursday and Tuesday 9/2- I stacked them closely as I want to start the school year chemo free!!! I'm also not counting herceptin and perjeta. 

    Looking forward- implant exchange mid October. Trying to decide round versus natural shape gummies- really conflicted. I am trying to avoid fat grafting (I have thin skin and would probably need with rounds) as I know they sometimes cause lumps and that would completely freak me out.

    Can't wait to join you guys on the other side.

    Sandra 

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited August 2014

    ONE day.  This time tomorrow I will be prepping to leave for my last taxol. :) I am more ready than you can imagine. I just want to start the healing of my body. I know rads is gonna take a toll BUT the rest of my ody can start. 

    I am still hoping my finger nails stick around. I have 4 that our discolored that I am questioning. My legs feel like they contain led which means my counts are down in the tank. Guess I will know tomorrow. 

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  • EverForward
    EverForward Member Posts: 242
    edited August 2014

    I am almost three weeks PFC and I'm hoping these lingering SEs will go away soon. My leg muscles are still so weak that walking makes them burn. I'm so out of shape that getting dressed leaves me out of breath (the high altitude in Big Bear may also contribute to that). My eyes are twitching and watering constantly, more than they did during chemo. My fingernails keep getting darker and tender, but no actual lifting yet. Hair on my legs is growing back in small patches, but no new growth on my head. On the plus side my taste buds have finally calmed down. Maybe when I hit the three week mark and my body realizes there's no more chemo, it will finally start to heal.

    I know, I know, patience. 

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited August 2014

    Sorry to hear of your problems Ever but I have to admit that it's a comfort to know that I'm not the only one.

    I'm two weeks after chemo today and I don't feel myself at all.  Yesterday my eyesight went blooey!

    I thought I might be having a stroke or something.  Everything looked like waves on a swimming pool.  It only lasted a short while but scared me.    

    I started excercizing a bit on the advice of my onco nurse.  Half an hour a day cuts recurrence in half!

    Then there's the benefit for osteoporosis.  So I've been trying to stay on my feet, do a little excercycling, etc.

    My ankle bursitis went crazy!  Swollen, very painful, I am back off of my feet and icing my ankle, which thankfully seems to help.  

    Then emotionally....need I say more?  I'm feeling down.  Remembering my parents illness and how I could have and should have done more.   

    My friends have been wonderful to me.  I am grateful for their kindness.  

    But it makes me remember how, in the past, I was not as thoughtful.  Maybe that is the good that comes from this?  I will try harder in the future.

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  • jhodro
    jhodro Member Posts: 240
    edited August 2014

    Tomorrow I will be 5 weeks PFC. I am finally feeling better in terms of the chemo brain. The tiredness went away mostly after week 3 or so, but I still have days where I'm more tired than I ever felt before all this began. I also started rads, on number 4 of 33, so that hasn't changed much yet, except the number of times I'm going to the doc office/rads etc. One day last week I had three appointments. Ugh. On a really positive note, I have noticed the hot flashes have started to subside. At least I'm having way fewer of them over the course of this past weekend. And I had my first 3 week dose of Herceptin and really didn't notice much in the way of side effects there. Thankfully!!

    Timuktu: hope you're feeling better soon. I've definitely learned a lot from this experience, some good and some not so much. 

    I have decided I'm done with the wig and hats. I have about 1/4 inch of hair and I'm not covering up anymore. It's too hot and humid and since I'm not at the office, I see no reason to be hot and uncomfortable. 

    Hope everyone is starting their week off with few SE's!!!

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  • MommyQ
    MommyQ Member Posts: 117
    edited August 2014

    Jen: Glad to hear your BMX went well and nodes are clear! That's great!

    linda505: love the cartoon!

    Jaimieh: Woo hoo! Last chemo is almost here!

    Sandra: 2 more to go! Yay! Re: the implants, my PS said the natural gummies have a 15 year life span where the rounds only have a 10 year, so I'm going for the gummies. I figure, the less surgeries the better.

    Everforward: I think it's going to take a while for our muscles to get strong again. I mean, we HAVE had to let them go for the last 4 months while we rested from chemo. All in time...But, at least the taste buds are back!

    Timbuktu: Eyes going blooey sounds scary. Glad you're ok now. Like you, I think I've learned to be more thoughtful of others after going through this. Before, I had no idea what to even say to someone who was diagnosed with cancer.

    jhodro: You're braver than me. I still cover up with wigs and hats whenever I go outside, even to check the mail!

    ***********

    Well, I'm 12 days PFC and the energy and the taste buds are returning, thankfully! I went to the PT today to have her start helping me with the cording. She did some massage and showed me how to do it on my own. I will see her again next week on Friday. Next week I also have my rads simulation Wednesday and my 3 week PFC checkup with my MO Thursday. Oh, and I go back to work next Wednesday. So, next week is going to be a busy week, but going back to work will help life feel more normal, I suppose! 

    Have a good evening!

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  • ColdInCanada
    ColdInCanada Member Posts: 95
    edited August 2014

    Wow Ladies - it sounds we're all starting to heal. But MAN, are there some bumps in the road or what? Whew!

    EverForward - I am now 5 1/2 weeks PFC and the muscles are still sore. But they're slightly better than they were last week, so I count that as progress. My friend, the Naturopath, suggested Glutamine - 1mg 4 times a day. It's an amino acid responsible for tissue repair. I'm off to find some today. I figure it's worth a try - anything to help with the constant pain and weakness in my legs. 

    jhodro - WAIT! You have 1/4 inch of HAIR??!! I am so super jealous over here! I have baby fuzz. Soft, WHITE baby fuzz. Which FEELS cool when you touch it, but doesn't LOOK like anything but a bald head. Still, I've (mostly) quit covering up too. Too hot, too much work, and I just don't care anymore. *High Fives* on the hair regrowth!

    Sandra - I've been noticing my vision is kind of wonky too. I'm told it will go back to normal in time. Once again, it's the whole PATIENCE thing for me. I just want to be normal NOW.

    Jaimieh - HOORAY on one left! I'm waving my pompoms and cheering you on! Regarding nails: mine were discolouring too. And then they stopped - so now the TOP of all my nails are browny-yellow, but the new growth at the bottom is completely normal. Hopefully, yours will follow the same path mine did. 

    Taste buds - at almost 6 weeks PFC, my taste buds are STILL acting up. Pretty much everything still TASTES right, but my taste buds swell and get sore and then eating can hurt just a little. I will say that the "flare-ups" are becoming less and less frequent, which is positive, but every once in a while I have to live on mush for a day. Also I'm finding that my digestive system STILL doesn't get along with certain foods, like spinach (which I LOVE). Everyday is an experiment in the kitchen. :) Who knew it would take SO LONG to heal, right?

    In other (GOOD) news - I have managed to drop 8 of the 17 pounds I gained during chemo. It's amazing how much water the body can hang on to! Just a few more to go and MAYBE I'll be able to fit into my pant before winter. 

    Take care Ladies!

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited August 2014

    I just saw someone on tv mention that soy sauce has glutamine.  I bet it's in some other foods too.

    I too have what feels like hair on my head but looks like a perfectly bald head!

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited August 2014

    so I am now officially one hour past chemo. :). I had to wake up to take the picture. Yes, I slept thru a bunch of today's treatment. 

    image

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited August 2014

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  • MJ1966
    MJ1966 Member Posts: 8
    edited August 2014

    7 weeks PFC. Nails are a mess.  Ends yellow/brown/black that I was covering with polish, but now they are splitting way back in the quick and tearing off. Not too painful like would normally be thank goodness. Apparently they have previously separated from the base and there appears to be a very thin layer of new nail covering . I also have prominent ridges (1 for each cycle of chemo I had) which makes polish less than smooth. Ahhh...the things I won't miss from this whole experience!

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  • mmtagirl
    mmtagirl Member Posts: 509
    edited August 2014

    Yay, Jamieh!  I am one hour PFC, too.  Got very emotional with the nurses and my sister when we left.  Will post more later.  Congrats to us all!

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  • SharonDe
    SharonDe Member Posts: 222
    edited August 2014

    Big Congrats, Jaimieh and mmtagirl!!!!  And to anyone else PFC I missed (Cold, jhodro, and more!).

    At almost 2 months PFC, I am happy to say I feel pretty much like my old self. Taste buds good, energy almost back, and seem better emotionally.  Heartburn is really the only leftover.  Oh, and being bald and having a toenail or two hanging on for dear life :)

    It's nice to see most folks checking in - I hope those missing will pop in to say hi.  It is understandable that some may want to put the forum out of mind as they get on with life after BC.

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  • jhodro
    jhodro Member Posts: 240
    edited August 2014

    Cold: my hair has started to grow, but what's funny is that it's got a gray stripe down the center, so basically that looks clear. Slightly reverse mohawk from afar. Although, to be honest, from afar, it probably still looks like I'm mostly bald, but I FEEL like I have a lot of hair. So I'm going with that. And even better, I realized today, the hot flashes are definitely SLOWING down. YAY!! And congrats on the weight loss!! That's awesome!! I'm still holding steady at a good 20 pounds to the positive from January. I'm hoping next week when the kids are back in school I can come home after rads in the morning and do something to get rid of some of this bulk!

    Huge congrats to all of you finishing. The light at the end of the tunnel is near!!

    Mmtagirl: I still am emotional. Twice today I teared up, once at the woman who encouraged me not to put off my mammogram in the first place (my dentist office's receptionist, who is now my good friend and also a survivor) and then when my husband was telling me that someone asked about me. Ugh - these emotions! I can drop a tear like no other!

    Today I finished 5 of 33 rads. Progress, that's for sure!

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited August 2014

    I went to see The Giver today with my daughter.  I was so embarassed!  I cried and cried and cried.

    It was a great catharsis though and I felt so much better afterward.  

    My onco nurse finally got back to me and told me I couldn't have the sixth infusion.  I give up.  I have such pain in my feet that it's probably for the best but I don't see why they took this attitude.  

    Yesterday a different  onco (I have two) explained that because of my osteoporosis I need to have IV infusions of some drug that can cause necrosis of the jaw if I have a problem in my mouth.  So I have to wait until all of the chemo is out of me, then I have to go to the dentist and make sure I have no dental problems and then have the infusion.  Hmm, I may be repeating myself... But the point is, today I have a toothache!  lol  How on earth did that happen?

    I haven't had a toothache in a long time but now that I'm scared of any dental problems, I have one.

      Maybe I'm grinding my teeth from all of the tension!

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  • Ddkath70
    Ddkath70 Member Posts: 129
    edited August 2014

    congrats Jaimieh and mmtagirl!!!!!! Yay!!!!

    Cold, please share your secret to losing the weight. I gained about 11lbs and it's not budging. I have been drinking a ton of water due to ankle swelling , which I thought would help. I swim just about everyday, I walk and jog in place and do leg exercises every day. Now, don't get me wrong this is at a slow pace, it's not P90X up in here. But, I thought I would see something...sheesh. 

    I'm also part of the peach fuzz/fine baby hair club. I can feel it which makes me happy, but like most of you have said, I still look bald. My eyes have slowed down on watering. The stomach has calmed down a bit and taste buds are back. My muscle fatigue is getting better I don't feel that burning stiffness while walking. All good things. 

    Jhodro, I hear you on being emotional. I cry at the drop of a hat. I'm kind of a mess. sometimes I'm so frustrated with how slow the healing is going, and I just sob. But, as my husband reminded me, I have to be happy about what I've accomplished so far and that chemo is over! 

    I had my simulation yesterday and got 6 tattoos!!! WTF! I thought 2 or 3. I also have to hold my breath for 30 seconds, they say it will move my heart out off the way. Did you ever try holding your breath for 30 seconds, it's not easy! And I never smoked! But I'm all for protecting my heart :-). 

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  • Tinkerbells
    Tinkerbells Member Posts: 211
    edited August 2014

    the paranoia runs deep- how do we know it's gone? In the absence if scans (only 1 positive node), how can we trust the treatment? Have 2 chemos left- done on Tuesday next week, and I am already a mess. I can't concentrate on anything and the back to school process is hard given the anxiety and chemo brain.

    Is anyone else fearing whether what we have been through actually worked? The side effects (poor vision, aches, ringing in ears) make my anxiety worse. I keep thinking- is it mets? Sigh.

    Just looking forward to next week. Mentally I am so DONE with being bald, puffy and tired.

    Hope you are all well, getting stronger evey day. Please keep checking in, it helps keep me going this last week.

    Sandra

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