Starting Chemo January 2015

Options
1…1314161819…66

Comments

  • SweetHope
    SweetHope Member Posts: 439
    edited January 2015

    I need to explain myself. I am enraged that a nurse would dismiss a patient in pain. I have cared for several loved ones with uncontrollable pain. I would have sought out heroin if I knew it would have helped. It was only the sweet release of death that ended their suffering; but enhanced my sadness for losing them.

    Now we must bravely subject ourselves to a slow drip of poison; to hopefully, destroy a minuscule devil that promises more pain should he be allowed. Am I more afraid of pain than death? Can I withstand seven more infusions, knowing the risks, the permanent changes they may make to this body? The gamble for a life without pain for a decade or so more?

    Yes, I will consent to the risk, the temporary lifestyle change, the financial burden, the embarrassing look, the lost carefree life. But I will not accept a caregiver's dismissal of my pain! I am too afraid of that.

    · Share on FacebookShare on Twitter
  • Brandi999
    Brandi999 Member Posts: 143
    edited January 2015

    I'm breaking out with red bumps on my cheeks and head. Minor but annoying. Also I'm 2 weeks in tomorrow and haven't lost any hair even though I shaved my head. Is that weird? Wouldn't that be a kicker if I shaved my head for nothing? LOL


    · Share on FacebookShare on Twitter
  • TeriMP
    TeriMP Member Posts: 89
    edited January 2015

    Hi ladies,

    It's been a couple of days since I posted on here but I have kept up with all your posts. Throughout this whole process I have been able to shut my emotions off and deal with everything in an analytical manner. The thought of chemo never bothered me (I was always the person saying bring it on); my BMX was my biggest fear of this disease. Now that I have started chemo I have come to the realization that my surgery was a walk in the park; chemo has been so intense and I just don't know I have the courage/strength to continue.

    I've only had one injection but have had almost every side effect (constipation, diorreaha, painful/itchy rash on hands, severe bone/joint pain, acne on upper body/face/head, fever, fatigue). Oncology nurses brush me off when I try to talk about my side effects, they don't seem to care.

    Last night my fever spiked to 100.4 with a very sore throat so off to the ER I went. My fever did come down but my neutrophil count is at 0.7. Waiting to hear back from my oncologist to see if is concerning (ER doc seemed concerned but told my the oncologist will make the call about what to do).

    I am 11 days in to treatment (73 more to go). If I'm having this many problems now, I am scared to see what the rest hold. My biggest fear is getting an infection am dying from it (my mom was diagnosed with cancer at the same age as me (30); and died from an infection at 31, I don't want that to happen to me.)

    I apologize if I am a Debbie downer, I just feel like chemo is getting the better if me.

    I hope everyone is doing much better than me!!

    -Teri

    · Share on FacebookShare on Twitter
  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited January 2015

    Good afternoon TeriMP, I am so sorry that you are having a rough patch. Chemo can be well interesting. Amazing what it can do, but a fright what it does do! Try to get ahead of the side effects. Hydrate your body, it will help flush your system. It's also important for digestion as well. I hope you can eat, are you? Try some easy things, Jell-o, fresh fruit, popsicles, pudding, mac and cheese, soups, anything you can eat to keep you strong and not dropping weight. I ate the same things over and over, and over. But I made it through all 8 infusions. Have you tried Sennokot or Sennokot-S for the constipation yet? Any nausea after chemo, and do you have meds to stop it? Important to get ahead of that as it is harder to stop once you feel ill. Baby wipes are helpful for all those tender parts. Claritin helps with bone and muscle pain. Sadly for fatigue, pamper yourself and sleep, sleep, sleep! I slept like my cat did, 20 hours a day to feel better! I did not have the rash or acne. I would call the MO and report all the symptoms, and get some relief. They may have to increase the pre-meds or dosage to relieve your SE's.

    Everyone here has been there done that, or they are doing it right now. I had AC/T and I have some permanent side effects, a few serious. Do report everything, it could add up to more than you think. This is for you, fight for it!

    We are all scared, and battling this awful disease. We did, we can, and you can do also. We have your back! Please let us know what we can do to help you, all the ladies here are truly wonderful. Get your meds working for you, pamper yourself, this is a rough go no matter how it goes. I am so sorry about your Mom, but I do hope you fight on for her and yourself!! This is exhausting, frustrating, and so unfair. I have a very aggressive cancer and triple negative to boot. But I will fight to win, and I hope I see you beside me!

    · Share on FacebookShare on Twitter
  • SweetHope
    SweetHope Member Posts: 439
    edited January 2015

    Dearest Teri, rage, rage, rage! I want you to fight with all your strength to see this through. My dear, to lose your young mother that way would, of course, make you worry. And again, unfeeling nurses! They are there to serve us. They should be working to help us with these side affects, not blowing us off like we are whiney babies.

    My SE's were not as bad as yours, but I still wanted to quit this madness. A day CAN make a difference. I got a shower this morning, put on clean clothes, grabbed the car keys and drove myself with windows down for a quick ride around the neighborhood. That was unthinkable yesterday.

    Make sure your oncologist talks to you. Be a pest! Let her know your fears. Make sure you both understand each other by the end of your conversation.

    You may have experienced the worst of it. The rest of the infusions may not affect you. It happens. But please know that we are all holding you in our arms, gently rocking away the tears, wishing away the pains; ready to listen to anything you may need to say.


    · Share on FacebookShare on Twitter
  • spookisgirl
    spookisgirl Member Posts: 96
    edited January 2015

    Hi Cheryl L,

    I can relate to your experiences through your diagnosis as they are very similar to mine--started out with 'just a lump' that turned into 20 lumps wrapped in DCIS that didn't show up on any scans--so mastectomy is coming my way too.

    I am doing ok. Day 2 after chemo was not bad for me, I even got out to social dance that night! Day 3 though....wham! I can't even explain what happened, I just crashed. Day 4 looks like it will be a 'blah' day, so not planning much except sleep, fluids and mini-snacks. So far not feeling nauseous, but my system might not be awake yet :)

    Keep strong ladies, and best of luck to those with treatments this week!


    Jenn

    · Share on FacebookShare on Twitter
  • SweetHope
    SweetHope Member Posts: 439
    edited January 2015

    Believe it or not... My nephew had non-hodgkins lymphoma and has been NED since chemo. This adult, burly, merchant marine has no memory of chemo, at all! He swears he never had cancer!

    · Share on FacebookShare on Twitter
  • Tennisfan
    Tennisfan Member Posts: 114
    edited January 2015

    TeriMP,

    We are in this TOGETHER. We will not let you down. We will be your emergency wings. You will land safely, promised. Everyone I talked to said the first two are the worst, then your body will adjust. Or maybe by then we will have adjusted and find it a tad more manageable?

    Now, let's talk about coping mechanisms. Who is your support system?. What do you like to do/could do to make you feel better- even if only mentally? Talk to a relative or friend over skype? Buying a little reward after each treatment? Having someone over to make you chicken soup for the soul (I am starting to enjoy this - before I used to brush it off). A new pair of shoes would be the one for me lol.

    What about your coping mechanisms, ladies? Do you have fun/uplifting suggestions for Teri?

    Finally, I hear you and think that your fears are totally normal. However do try to rationalise the fact that the advances in BC treatment in the past 15-10-5 years are such that our prognosis is far superior to what it was then. The understanding of the side effects and infection risks are also much better controlled so keep monitoring your temp, buy a little booklet to note everything and talk it thru with your onco, and keep your big sisters in your January BC family posted on your progress, ok?

    BTW I am starting a mindfulness course tonight. They say it does wonders for both strees/anxiety and pain management... Look to see if something is maybe offered in your neighbourhood?

    Your January BC big sister Marjori

    · Share on FacebookShare on Twitter
  • TeriMP
    TeriMP Member Posts: 89
    edited January 2015

    Hi beachbum and sweethope, I have been fortunate in that I have had no nausea and my appetite has remained the same (just no taste buds ). I did start taking stool softener today so hopefully that will help get things moving again. It was weird I went from constipated to dioreaha back to constipated. I think my mind/emotions are getting the better of me as I feel I have no control, I need to just relax and go along with the ride. I know mentally it is going to best in the long run, the end just looks so far off.

    I want to thank you both for your kindness and words of encouragement!! It is times like these I wish I had a mother figure in my life to help me, but I know she is watching over me. For me it is hard to ask for help as I like to be the one helping others, and be my own rock. I know today is a low day for me and tomorrow is a new day that I hope will bring a new mood.

    Much love!!

    Teri

    · Share on FacebookShare on Twitter
  • Cherylfg
    Cherylfg Member Posts: 97
    edited January 2015

    Welcome to our new members. I'm sorry you have to be here but I'm glad we can support each other.

    Teri- my mother also died of BC in her 30's. Now, I'm in my 30's with BC. I can relate to your fears. BC is scary enough and layering on losing your mother to it, can be overwhelming. We are here to help. Definitely come here and post away! I also urge you to talk to your nurses and doctor. Let them know you are struggling and have them help.

    Well, my second infusion was both better and worse than my first. Better because I had a lot less anxiety, and anxiety induced nausea, and because I knew how to manage my SE better. Worse, because I was just more worn down. Yesterday was particularly rough. Today has been much better.

    My hair is almost totally gone. I have huge bald patches on my head and it feels like my hair follicles aren't even holding my hair. I was outside today and it was just flying off my head! My 3-year-old told me my hair looked crazy. It's actually pretty itchy and I never thought I would be happy to see it go, but I wish it would hurry up and go so it will stop sticking to everything.

    Cheryl


    · Share on FacebookShare on Twitter
  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited January 2015

    Hi Cherylfg, I am glad that you are doing better. Managing the side effects will be a huge help to keep you feeling better. I used Johnson's Baby Shampoo on the prickly stubble on my head, and then my regular conditioner. I used a net puff to sorta gently scrub the little tiny hairs away. Funny how we dread losing the hair, and it gets annoying and we want it gone now! I get that one!

    I am so sorry about your Mother, and I know how you feel with your own cancer. I'm sure you are going to go game on, full steam ahead. I had my first rad today, so number 2 tomorrow. I'm throwing anything and everything at this cancer, and praying a lot for all of us!

    I hope you have time to nap and snuggle up with the little ones. You need to nap too. Have a great evening!

    · Share on FacebookShare on Twitter
  • loriekg
    loriekg Member Posts: 263
    edited January 2015

    Hi everyone...made it through the weekend mostly sitting on the couch. Thursday was first chemo, then Friday had shot (felt perfectly normal those two days) then Friday night I was in the bathroom every hour with horrible cramps. Imodium must have kicked in, as I didn't have diarrhea--just felt like I would! General body aches yesterday--like the flu. Also had bloody nose, and today it felt like someone had grabbed my breast and squeezed the tar out of it. Think that's in my mind? Tomorrow I go in for genetics testing so I hope I can get up and out of the house without too much struggle. The headaches are the worst for me.

    While on the couch all weekend, I found videos from Patti's Pearls (she had lots of videos on tips to care for wigs). Who knew there were so many wig tutorials out there!

    Tennisfan--I'm in the DFW area...so right on your way to Austin! Maybe I'll join ya! :) How was the mindfulness course tonight?

    Teri--so sorry you were having such a rough time with the SE this weekend! I hope it helps to know that you ARE NOT alone! I can see already having the surgery thinking that would have been the hard part.


    · Share on FacebookShare on Twitter
  • mommacat4
    mommacat4 Member Posts: 215
    edited January 2015

    Hello ladies, I have not named my body parts either except for "the girls" but they are gone now to be replaced with expanders.....

    anyway-- for heartburn I use OTC Prilosec or (Omeprazole-generic name). I have been using it for years. They said just keep using it. Also, they said for nausea to use ginger.. I tried ginger snaps and a juice that was ginger, and ginger ale, I can't handle the ginger, it makes my mouth burn like crazy. I had a hard time swallowing it and it burned all the way down. And the soda of any kind makes me bloat as if I were 8 month pregnant. So I stay away from soda. They did prescribe 2 different meds for nausea, one for mild nausea (Compazine) and one for severe nausea (Zofran). They work for me when I need them but I have found that if I nibble on things through out the day like jello, popcicles, fruit, veggies. ..that helps to keep the nausea down. Also drink lots of water. I put fruit and vegetables in my water like lemon and cucumber at the same time. That also helps the taste of water.

    Cherylfg, that story about your children is beautiful. I am so grateful that you have them and the support of dh. And the hair looks good too. Today my 19 year old daughter asked me how it feels to be doing chemo. She asked what I am actually feeling on the inside of my body. Like what does fatigue feel like? I had to actually think about how to explain these experiences to her.

    I too find that I am changing my outlook on life meaning, I have slowed down and don't feel the need to prove my point as much. I actually see why the elderly are so wize. They have lived to be that way life has changed them too. Cancer is changing me. I can only hope that I too will be a wize elderly person. But not too soon!!!😊

    keep on keeping on everyone. You are all beautiful. God bless

    · Share on FacebookShare on Twitter
  • LakesideWLabs
    LakesideWLabs Member Posts: 29
    edited January 2015

    Loriekg for bloody noses, my nurse suggested spraying each nostril with saline spray and then taking a little bit of Aquaphor with a qtip to coat the inside of each nostril. Working for me to minimize the yucky bloody noses.

    I too had severe cramps. A couple things are helping 1. Avoiding all dairy products (a suggestion from our BC sisters on these boards) has worked for me over the past few days! The "d" is still there... Helped by Imodium. But I feel like I can handle the "d" but the cramps were unbearable. 2. On days I felt good I was eating "normal" but then realized i would pay for it later with the cramps. So now I am eating "bland" (plain grilled chicken, rice, applesauce, jello, etc.) as my standard even on the days that I feel good. 3. Eating more frequent small meals rather than normal size 3-meals a day. Good luck.

    All, hang in there. I am keeping you all close at heart and in my prayers. Xoxo sending virtual hugs to all of you!

    · Share on FacebookShare on Twitter
  • TeriMP
    TeriMP Member Posts: 89
    edited January 2015

    hi cherylfg, I am sorry to hear that you have lost your mother at an early age as well. It is a terrible thing to go through! My mom had leukaemia but died from complications due to compromised immune system from chemo/rads/bone marrow transplant. I know that was 20 years ago and modern medicine has come a long way, just a scary thought that creeps up in the battle we are going through.

    I am happy to hear that you are managing your SE well, that fatigue can definitely be a bummer. Sleep and rest while you are able! I haven't lost my hair yet, but I'm sure that will be coming soon. I can feel my scalp getting tingly.

    I'd like to thank you Lorikg and all the other ladies who have been so supportive and encouraging; it truly means a lot and you are all in my heart. It is nice to know that I can come here and vent when I am having a low day. My husband is truly amazing and had been my rock through this whole ordeal. But sometimes I feel guilty for having a bad day and venting to him about it (I don't want to wear him down with my stress). I think yesterday was just a bad day....I even cried because I burned our roasted potatoes. But he was a trooper and ate them all like they were the best thing I've ever cooked

    Much love!!

    Teri

    · Share on FacebookShare on Twitter
  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited January 2015

    TeriMP, from what I have read, we are allowed those bad days, to vent and cry, to blow off the BC for a few hours. Then we have the ability to hug our loved ones, smile and laugh, cherish every second we have with them. I know how hard it is to laugh and play, hope and dream, with thoughts of tomorrow in our heads. We all know that it may not come. But I refuse to let BC take that too. It scars our bodies and our minds, but that is where I draw my line with BC. It will not take away laughter, smiles, and love. Only we can allow that to happen.

    I am so happy that today is much better!

    · Share on FacebookShare on Twitter
  • spookisgirl
    spookisgirl Member Posts: 96
    edited January 2015

    I have an unusual (but most appreciated!) support system--all those I dance with, in particular a fellow student, my instructor and his family. My family lives on the other side of the country and I am neither married nor attached in any way, but I feel so blessed that I have such a huge 'dancing family' to support me :) They mean a lot. I am tossing up this picture because it reminds me anything is possible--and I am doing it! 6 weeks post partial Mx, 1 week before starting chemo and my 36th birthday.

    image

    I hope we all have strong support systems, but if not--message me! I will always help, and since I am 'working from home' 'as tolerated' between medical appointments I will respond as quickly as I can. Stay strong ladies!!

    · Share on FacebookShare on Twitter
  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited January 2015

    Spookisgirl, Hey Rock Star, that's awesome. Dance like no one is watching, and love it. We all have so much to give and do, you inspire me to dance on!

    · Share on FacebookShare on Twitter
  • mommacat4
    mommacat4 Member Posts: 215
    edited January 2015

    spookisgirl,

    that is a great picture, keep on dancing and smiling. I used to do clogging when I was younger and it's still in my bones. It's something I enjoyed doing all the time. I never went to competition but it was still very enjoyable. Who knows, maybe someday I will get back into it.

    For everyone, keep smiling keep doing things you enjoy. Make the time for them. Love, laugh and smile from your heart. Thanks for being such a great group of friends.

    · Share on FacebookShare on Twitter
  • SweetHope
    SweetHope Member Posts: 439
    edited January 2015

    Love the look! Great legs! You are inspiring!

    · Share on FacebookShare on Twitter
  • bama351
    bama351 Member Posts: 42
    edited January 2015

    I join the January 2015 chemo club on Thursday.. My first treatment is 1/29.. Will get my port after the fist treatment so I hope that doesn't make things worse

    · Share on FacebookShare on Twitter
  • SweetHope
    SweetHope Member Posts: 439
    edited January 2015

    Bama, welcome, and sorry you are here. What drugs will you be taking? The "Red Devil" adriamycin is the drug that is rough on your veins. Port surgery is easy and the port itself isn't bothersome.

    · Share on FacebookShare on Twitter
  • PMR53
    PMR53 Member Posts: 452
    edited January 2015

    TeriMP

    Bless you for venting all your fears. I hear you and understand. I Am dreading Monday and my #2 chemo. But I know it's the best chance I have to kick this horrible BC. I have had all the SE and am praying for a better outcome. Please know we are all here for you. We cry the same tears.

    Spookigirl. You are so beautiful and amazing. You give me hope!! Thank you for the picture.

    Thank you Tennisfan for your heartfelt words.

    Sweethope. I am enraged when we verbalize our fears and pain and it is dismissed or not addressed at all. I call this compassion fatigue. Getting prevalent in many care settings I am afraid.

    Love to you all. I am taking one day at a time. That is all I can do. It is all overwhelming and scary.

    Today is day 15. I have cried a few tears I will admit. It is raining hair.

    Patty.

    · Share on FacebookShare on Twitter
  • mommacat4
    mommacat4 Member Posts: 215
    edited January 2015

    bama351, I am sorry you are here for these reasons but glad that you are here because you won't find a more supportive and beautiful group of ladies. Don't be afraid to voice any concerns, thoughts, ideas, fears....etc...

    last night I was laying in bed and just started crying because my hair is starting to thin out one strand at a time but often through out the day. I was thinking about my mom and how much I miss her. (She just passed away in June 2014). I haven't even gotten the chance to grieve her before I was dx in October. Then my life exploded with dr appointments and surgery and tests and now chemo. It's difficult to stay strong I will admit. I am not looking forward to losing my hair. I already chopped it short and donated it for cancer so someone could use it before I started chemo.

    I do have a wig and scarfs so I am prepared but not emotionally. I need to get my head in the game and prepare myself.

    Thank you for listening.

    · Share on FacebookShare on Twitter
  • spookisgirl
    spookisgirl Member Posts: 96
    edited January 2015

    Thanks all for the compliments :) I absolutely love to dance, and glad sharing helps brighten your days!

    I am glad to hear other have itchy heads--mine is driving me crazy!

    Mommacat--I am not sure any of us are ever emotionally prepared for this, no matter how hard we try to be. We just have to take it one day at a time as it comes and be the best of ourselves we can be, even if it is not what we consider 'the best'. We are always the best we can be as long as we are willing to accept that we can't be prepared for everything. Big hugs to you--I hope it does get easier!

    Anyone else craving meat?? I am not a big meat eater normally, but have had insane cravings for juicy red meat dripping in BBQ sauce...oh and chocolate chip cookies!! Then I had an amazing dream about a really cheesy mushroom lasagna, which now, I HAVE to make.

    Greek yogurt and hommous seem to be off the list for me :( can't get them down. Mouth is all sensitive :(

    Got out to walk some today and felt great to get some fresh air. Planning to have a lesson on Thursday and I can't wait !!

    Take care all, and welcome to the new ladies--sorry you are here, but feel free to let lose as you need to--that's what we are here for!


    Jenn

    · Share on FacebookShare on Twitter
  • kjybaby
    kjybaby Member Posts: 15
    edited January 2015

    Bama351 I'm with you: I start chemo on the 29th as well. Strangely enough, I'm no longer scared - I'm just anxious! Do you know which chemo regimen you're taking?

    I echo that port surgery is relatively easy. I did feel some soreness for the 3 days after or so, but nothing that couldn't be managed with acetomenaphine.

    Looking forward to kicking butt with you!

    · Share on FacebookShare on Twitter
  • loriekg
    loriekg Member Posts: 263
    edited January 2015

    Thanks for that tip, Lakeside! I picked up some Aquaphor today...instant relief!


    · Share on FacebookShare on Twitter
  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited January 2015

    Hi Ladies, I hope everyone is doing well. I wanted to tell you about the wonderful evening I had. I went to Look Good Feel Better, a program that the American Cancer Society has for active cancer patients. They have information on wigs, cosmetics, scarves, and they have volunteer cosmetologist that teach the class. They taught us how to apply make up to hide all the "beauty marks" that we get from chemo. They also provide a free make up kit by skin type. The cosmetics are all major high end labels, and a very generous supply of products is included in each kit. We also received a nice scarf, lip gloss, and a pair of earrings. After going through chemo, surgery, and starting rads, I need the make up!! And it felt so good to be pampered for 2 whole hours, and look awesome when I left.

    I just wanted to share this info in case you haven't heard about it. I was very impressed, it is free to attend, and I would recommend it. If you want any more info, please ask. I loved it! And it is a perfect way to cheer up, and feel pretty!

    · Share on FacebookShare on Twitter
  • loriekg
    loriekg Member Posts: 263
    edited January 2015

    Love that picture, Jenn!! Looks like so much fun!

    Are you not having any problems with heartburn!? I can't even think of lasagna without feeling it... not to mention BBQ sauce! LOL Last night i wanted something bland and I asked husband to just make a box of rice-a-roni. Well, he didn't see the right box and ended up making Zatarain's dirty rice. Ugh--tried to be polite and ate a few bites, but i paid dearly for that!

    Oh, Teri--when I read you burned the potatoes...my first (and only) thought was, "she's making dinner?" I have to get off this couch! :)

    Welcome bama351, good thoughts to both you and kjybaby on Thursday!

    --Lorie


    · Share on FacebookShare on Twitter
  • TeriMP
    TeriMP Member Posts: 89
    edited January 2015

    PMR53 - thank you for the supportive and caring words. It is very much appreciated and heart warming to know how truly caring everyone is.

    mommacat4 - I am sorry to hear about the loss of your mom. It is never easy and now you have this horrible disease to deal with. We are all hear for you!

    Spookygirl - amazing picture! I am in awe that you have the energy to get up there and shake your money maker. :-). Today is the first day I feel like I have my energy back. I only hope I can be like you and continue with the things I love.

    Tennis fan - sorry I must have missed your post! My husband has been a great support along with my step dad. I try not to bombarde them with too much as I know my husband has lots on his plate and my step-dad has seen what my mom went through. For the most part I am usually upbeat, joking and happy. I think going to the ER just sent me over the top. This website has been another form of support for me. I try to keep my mind busy with crosswords, online scrabble etc. and I usually pop by my work to keep my mind drag and updated on policies (I am a licensed mutual fund sales rep and financial lender).

    I have been very fortunate that I haven't had too bad of heart burn, maybe 3 days and tums was sufficient. I refuse to give up my love of spicy foods, Chicken curry is my favourite and luckily has agreed with me so far (fingers crossed). I'm too scared to try pop it club soda use to the carbonation and the taste of water repulses me, but iced tea has become my new go to drink. Not the best but least it still water (just a lot of sugar added).

    A lot of you have mentioned that you got a port. My oncology team has insisted that I get a PICC as my veins are quite small. They said a port is too invasive and a PICC is better (given I only have 3 rounds left). Has anyone else been offered this?

    Much love!

    Teri

    · Share on FacebookShare on Twitter

Categories