April 2015 Chemo Crew... Starting in April? Please join us!

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited June 2015

    Thanks Susan. I did feel proud of myself for being insistent....being in control of getting it done right is pretty much the only control I have afterall.

    I LIKE the swimwear. I've used a long sleeve swim shirt over my suit for the last 5 years. I had a basel cell carcinoma skin cancer surgically removed from my face in 2010. That puts me at hight odds for more skin cancers, so I'm not taking any risks. My son and I both wear the long sleeved swim shirts and hats 100% of the time at the pool or beach. I've gotten mine at Coolibar online.

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  • KBeee
    KBeee Member Posts: 5,109
    edited June 2015

    Dizzparkmom, Congrats on finishing AC. After the next few days of AC yuk, it will all be better!

    Here's a link to Joan Lunden's new look. She ditched her wig today. She underwent treatment (12 Taxol then 4 AC) for triple negative breast cancer over the past year.

    http://www.joanlunden.com/content_items/656-people...


    Here's hoping we all look that good in about 6 months or so!

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  • ksusan
    ksusan Member Posts: 4,505
    edited June 2015

    Good to know about Coolibar. The men's Speedos long sleeved shirts had ape-arms, and the women's (not Speedos) were really tight.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited June 2015

    ksusan you look like a selkie! I think I need those swim tights!

    Note to self: do not forget to take antacid then eat spicy Chinese food and a pint of cherries. Stomache will remind you that you are in fact a sick person not a well person.

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  • ksusan
    ksusan Member Posts: 4,505
    edited June 2015

    Bless the stomach, I guess!

    #15: I am grateful for homemade lentil soup.

    image


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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited June 2015

    is that homemade lentil soup in your picture? 😊

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  • sheshe3
    sheshe3 Member Posts: 70
    edited June 2015

    well, still no word on my path report... I called today and now my BS is off until Wednesday! The receptionist told me that the report has arrived, but only the Dr could tell me what it says!!! So I called my MO since he should get a copy also, but he didn't have one! This is driving me bananas! I'm thinking I won't hear anything before Wednesday now. So ma

    ddening!


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  • ksusan
    ksusan Member Posts: 4,505
    edited June 2015

    Sheshe: ARRRGGGHHHH!!!

    Littleblue: Yes, I made lentil soup while my delightful wife was canning no-sugar raspberry jam (sweetened with stevia). French lentils, cherry tomatoes, carrots, brown rice, leftover lamb, olive oil, spices (garlic, shallot, salt, pepper, ancho), sherry, agave nectar). Yes, I used a few tablespoons of sherry even though I'm not cleared to drink until Thursday. Sue me for medical non-compliance.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited June 2015

    nope I'm not going to sue you...I'm moving in! Just kidding but between that and the raspberry jam....I'm hungry again!

    Sheshe...that's complete and utter crap. You should not have to put up with being treated like that! Arghhhhh!

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  • KBeee
    KBeee Member Posts: 5,109
    edited June 2015

    Sheshe, According to HIPPA, You have a right to your path report. If you go and request a written copy (which you should get anyway), they have to, by law, give it to you. I have done this.


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  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited June 2015

    DizzParkMom, I was offered the Neulasta patch too, but also watched the video. Too much for me! I don't need any more stress. The shot is quick. I said, "no thank you." I don't know how you travel so far for treatments! Wow! Did you have surgery? I am afraid of even thinking about flying even after chemo. Do you have sleeves for the cabin pressure changes? I am afraid of doing anything that could cause lymphadema. Guess I am a wimp


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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited June 2015

    Heading to work in just a bandana for the first time...

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  • Italychick
    Italychick Member Posts: 2,343
    edited June 2015

    good luck LittleBlueFlowers. I started wearing my bandana to work about a week ago, and now everybody is used to it. But they were shocked at first, and I got a lot of questions. Now I am glad I switched over to the skull caps

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  • KBeee
    KBeee Member Posts: 5,109
    edited June 2015

    I just love when people say "you look tired". Why don't they just come out and say "you look like crap today."

    Lituleblue, I just wear s ball cap at work unless responding on an EMS call or teaching. Of course they have all seen me bald before and about 20 shaved with me. I hope it goes well for you

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  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited June 2015


    Coming in as a May chemo girl to ask a question.....I am going to have 3rd T/C treatment on Thursday and I am still so tired. I do one little thing and have to rest. Last treatment, I feel like I had more energy. Actually, I feel like I had more energy last week than today. I just want to get through this, but am finding it difficult. I do not work or have children at home. I do not know how you ladies do that......you are amazing. I know exercise is important, and I try to move and walk as much as I can, but I live in southern Florida and the temperatures and humidity are both close to 100. I cannot stand the heat. Is this normal to feel so weak and tired. I feel like a wimp. Before my BMX in April, I rode my bike, went to the gym, worked as a teachers had had enough energy. Feeling like a bald mess

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited June 2015

    Italy and Kbee, Thanks for the encouragement! My office is very casual, but still...I find I hate meeting new employees like this. Oh well, only way out is through, right? And honestly, no one has seemed to care, so the issue is all mine.

    Kbeee, LOL on looking tired....if only all we looked is tired, am I right? :) What people should say is: you look like a total badass warrior woman who is fighting her own body and medical science for her life, and winning. You look like someone who has just run a marathon and is fighting to rebuild her system every two weeks. You don't look tired. You look triumphant. Or..I wish someone would say that to me LOL!

    Mysunshine, your fatigue sounds like what we have all experienced. This stuff is cumulative. Be kind to yourself, you will get your strength back after treatment!

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  • Rpayton
    Rpayton Member Posts: 235
    edited June 2015


    mysunshine48: After my 3rd I was wiped out and felt the same way. I realized working and trying to focus was going to get harder than I thought.  We all know what you are feeling, very disoriented, fatigued, chemo foggy brain and all the other symptoms too.  I was frustrated and felt lazy but then realized that I need to get past that and just go with it and rest. Take the day for you, hydrate, space out through the window and just breathe.  It will get better.  I had #4 Friday and yesterday felt just awful added indigestion and heartburn to the symptoms. Hang in there and give yourself a hug and a break. 

    littleblue: I do whatever I'm comfortable with. Some days I went to work with a wig and some days did the bandana as my scalp was so irritated. I see many bald and think it is great! There are so many of us going thru this that we need to be strong and allow everyone choices that all is acceptable. If someone hasn't been there they aren't likely to understand anyway no matter how we appear. 

    I'm feeling pretty good that I have taken the disability now as the s/a this round are much worse. Worried though as I will run out of FMLA time, need to ask for an extension, loss of pay and my employer may not hold my position or any position. But I guess then that is meant to be if it happens. This is a time for me to explore and I'm just gonna' have to let go of all that I have no control over. Hard to do after so many years of working.

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  • woodburns
    woodburns Member Posts: 56
    edited June 2015

    First Taxol was not so bad, until. . . . . Monday afternoon. About 1:00 pm I ached, no energy, I ached, (hmm did I say that already?) I stuck it out at work till I got off at 4:30. Managed to get home, ate hot link, bar-b-q sauce, onion and wrapped it in a tortilla and small glass of Sprite. Tasted sooooo good. The day after my Taxol had no taste what so ever. Don't remember that happening the last time so soon. I took a pain pill and headed to bed. Feeling really good today. Guess what I had for breakfast. Yep, hot link, bar-b-q sauce, onion and wrapped it in the tortilla and a small glass of Sprite.

    Had an odd occurrence this morning. Left for work as usual, next thing I know I am thinking I don't recognize the way I am going. Then I see Turkey Creek on the right on 2208. I realize somehow I made a circle and was headed back home! I have no idea how the heck I did that! Hey, I am chalking it up to Chemo Brain. At least that gives me an excuse.

    Question: Is anyone else getting trigger finger? I have 2 fingers that have started that. I also would get cramps in the front of my leg. That stopped when my Dr. told me to put a bar of soap in my bed at night. I laughed but tried it. I did not get a cramp. I thought "mind over matter". (This was with my last trial treatment). About a few weeks or so later, I got the shin cramp from hell. Ran hot water on it for 30 minutes before it eased up. I thought, u-huh! Then I saw the soap on the floor. Does not matter what kind of soap. Then told my boss about it. He said his Dad used cut pieces of soap off a bar and put them in his socks. Swore it helped for the leg cramps. I googled soap in the sheets. It is there. So who knows. Needless to say, I plan on doing forever.

    Littleblueflower - I had reconstruction but decided to have them removed when I went for radiation 2 years ago. Have not regretted it a bit. No more shoulder pain nor shoulder indentions. Only time I use prosthesis is Church and special occasions.

    allicat1214 - Congrats on the up coming wedding and being 10 days post Chemo. Had my 1st chemo Friday. Will be 11 more weeks before I finish.

    KBEE - Sorry to hear about your friend. I will add her to my prayer list. Praying for so many people really puts things into perspective.

    lovilynne - I put Walmart brand of Aquaphor on my feet w/socks. Keeps my feet quite soft.

    DizzParkMom - Can you imagine getting on a plane beeping and checking the flashing lights? The whole plane would be in a panic.

    ksuzan - Love the suit. Especially the swim bottoms. But then pink, blue and black are all colors I like.

    I am sorry if I missed anyone, which I know I did. After my first post, I just slept and slept. Thank you all for all the info you supply. This is so invaluable.


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  • lovlilynne
    lovlilynne Member Posts: 405
    edited June 2015

    I just realized today that I have not had the emotional/mood swings that I had on AC. I had been in tears or close to tears so many times after AC #3 and #4. Taxol seems to have eliminated that nasty side effect.

    Regarding hair, lack of it, scarves, bandanas, or do-rags, etc. I have to say, I was totally underwhelmed by Joan Lunden. So what? Seems like a bigger deal than it should be - she ditched her wig, she has hair - lots of it from the picture - and I'm sure she has a stylist on call. I really cannot believe people were like "oh my god" - it's almost insulting when you think of what us little people do everyday - like go to work without hair or only in a ball cap. Jeez, get over yourself.

    Regarding looking tired comments - I haven't gotten that, recently I've gotten the "You look good" - I do not look good, and I'm not being modest. I haven't been wearing any make up because it just slides off my face. I haven't been wearing any hair because it's hot. I have a hat/cap that's just to cover my ugly bald head - but I don't look good in it. I don't look good in any of the head coverings available. I don't know what to say when someone says that - I don't even want to say thank you because I don't want to encourage that. I sometimes can slide in a question/comment like "wow, you must have been expecting a lot worse" or something like that. I try to remember that this person is trying to be nice or supportive, but it's so awkward, that it's not helpful at all. Anyone have any good ideas for comeback?

    Lynne



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  • StacyMc329
    StacyMc329 Member Posts: 48
    edited June 2015

    well taxol #3 in the books...feels good to only have one left.!. Went well but I think I had a hot flash while waiting the 15 min in the dr office. He did a breast exam and I think I was sweating everywhere... Yuck for him. He said I had very little scar tissue under my arm incision and breast incision so that's good. Going to call and make my radiologist appointment tomorrow so I can maybe in joy a bit of summer. I think I see a light at the end of the tunnel. So I understand my friends have younger kids and its summer and who really wants to deal with cancer..but I feel pretty lost lately:

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited June 2015

    woodburns, what is trigger finger?

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited June 2015

    Littlblue- I'm dropping in from the March group to say hi and urge all of you on. I haven't read all of the posts, but I have taken 1000 mg per day of L-Lysine on TC in addition to the baking soda and salt thing. It has helped. I can even taste my coffee. It was worse at the beginning. It's the only SE that has improved. Another in our group actually scrapes her tongue and applies coconut oil after to get the dead skin out. I hope I'm not repeating or annoying.

    Wishing you all well this week. The end is near

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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited June 2015

    Lynne, I actually DO think they think we should look a lot worse. Most people only know about chemo side effects from what is depicted in the movies, i.e., endless vomiting, weight loss, etc. even though those particular side effects are now generally well controlled. I can't tell you how many people have asked me why I haven't lost weight on chemo! When I tell them that the TC regime usually results in some weight gain, they look at me like I must be secretly eating 5 hit fudge sundaes a day, otherwise why wouldn't I be skin and bones on chemo. I just remind myself that we are deeply immersed in BC world now and until 6 months ago I would have been as equally ignorant. It helps a bit. Sometimes I think people are even more skeptical of me because I am cold capping and still have my hair and am trying to maintain a normal routine no matter how awful I feel. I recall someone on one of the boards saying that when someone says "you look great" just say thank you and don't tell them it took three hours to get dressed and out of the house and that you still feel that you look like cr*p. unfortunately, no one but your nearest and dearest want to hear the truth and even they sometimes want us to lie and say we feel fine. So glad we have this board to let it all out!

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited June 2015

    Mysunshine, I have not had surgery yet. I am doing neoadjuvant chemo and will have surgery after 4 more rounds of chemo. The traveling does in fact SUCK, but I have gotten halfway through, so that is at least a comfort. I do plan to have a lymphadema consult/sleeve fitting before we fly home. I will most likely stay in Illinois a couple weeks so that I don't have to stress the flight too close to surgery. Haven't even made up my mind yey on reconstruction, so if it's a lengthy surgery, I may stay there even longer....but not too long...I'm from Arizona can't handle the snow for more than a few days.

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited June 2015

    Scarlett - ugh, yeah, thank goddess that this DB exists! I knew more than the NP giving me chemo training. I was more prepared than I would have been had it not been for these DB. And, now I get my emotional/psychological support here too.

    I must be in annoyed mode. I've had it with my family too - my DH and kids anyway. They are not doing a f'king thing around here. Except to make more messes and not clean them up. I had to take DD1 back to endo today for her pump, and then we stopped to get groceries for dinner. DH comes home and has to pick up his car that was in the shop, so DS takes him. DS comes home first - SNIFFS THE AIR - as in "what's cooking", doesn't smell anything, so goes back to his room. DH doesn't show up. I start dinner and find that no one turned on the dishwasher last night or this morning, so all the dishes are dirty. DH still not here - so I call him - I pretty much know what he's doing, but I pretend like I'm checking to see that his car hasn't broken down. No, he's just stopped to fish on his way home. Must be nice.

    I wonder - does it even pass through his mind? Does he say, "hmm, I'd like to stop and take some casts, but it's dinner time, and Lynne might need some help, I probably should just go home." No. No. and NO. I am so sick of asking for help. My sisters and friends want to help and do more, but I shouldn't have to have them come and help me - I should not have to ask DD1 again and again to pick up her clothes - I have been on her for 3 straight days now, and every time I go up to check on her, she's back on her phone or computer. She's at TKD right now, so I'm going to go take it away, can't take the phone because she uses it for diabetes.

    I think I'm going to start beating them - really missed the mark on that one.

    Sorry, just cranky. This is not new, so I don't know why I expected it to change. I keep thinking, "they'll be sorry when I'm gone".

    Lynne

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  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited June 2015

    Oh, this breaks my heart. You should not have this stress in your life, especially now. I cannot imagine having to cook for a family right now and do all you are doing. Can you not sit them down and just say, "look, this is not easy for me or any of us, but right now, my job has to be taking care of me." How can you help me get through this?" I don't know, but something needs to be done because your # 1 job now is taking care of yourself. If no one turns on the dishwasher, then they have dirty dishes! YOU are the priority right now! Maybe I am out of line here, but I cannot imagine a husband snd kids acting this way!

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  • Addie29
    Addie29 Member Posts: 307
    edited June 2015

    ksusan I need to find swimming gear like that- thinking a sporting goods store should have something like that.


    Dizzparkmom sometimes it's just about convenience. Good for you.


    Today was such a good day. I didn't have chemo (will Wednesday) because today was my sons kindergarten graduation ceremony. What a bittersweet day- I pray to God that I am here for many many more graduation ceremonies. Finally got the pool opened and took the kids for an hour swim, went for ice cream and went to the local cider mill. All together it was an awesome weekend. On Father's Day I treated my hubby to a movie and we saw Jurassic World- it was a good movie. We haven't been to the movies since 2007!!!Taxol #1 last Tuesday treated me very nicely. I didn't actually feel body aches until Saturday- 4 days post chemo. They lasted all weekend. Other than that I felt great. Although I think I would rather feel sore during the week and feel good over the weekend. Tomorrow I head in for taxol #2 hoping she is kind to me and here's to hoping all you other ladies are feeling well and se are minimal.

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  • KBeee
    KBeee Member Posts: 5,109
    edited June 2015

    Scarlett, I think you're right. People expect us to look like we're dying. I was surprised about how little people know. I have people ask me if chemo is just taking a pill each week. Working in the healthcare field, I forget that stuff I consider everyday knowledge is different from others. I also grew up with my mom having had cancer along with 3 other moms on our street (all but one have daughters who have cancer), so I guess I just grew up knowing what it's all about.

    Littleblue, Triggerfinger is when your finger "locks" in place or "snaps or "catches" each time you bend or extend it. I like your idea of people should say! I had to get some things done at work this morning and I know it was obvious to others. One of the guys simply said, "I'm headed out to do chores. I'm just going to say a prayer for you. A special prayer that your day gets better. I appreciated that.

    Woodburns, After TC, I developed carpal tunnel and cubital tunnel and a trigger finger, and have had to have all surgically corrected. I am apparently predisposed to it. They want to correct my other elbow too, but I think I'm done with surgeries for a while. AIs make people more susceptible to trigger fingers.

    Stacey, Do you get breast exams each time? My MO has not done one yet, but I came to him within days of my surgery.

    Lynne, I only get the "You look good comments" when wearing my wig. Apparently I look much better in my wig than my ball cap. I do know that, but I am all about comfort right now and not looking good. I like your comeback.

    RPayton, I hope everything works out at work.

    Mysunshine, the fatigue is definitely cumulative, especially as your blood counts drop. Your energy will return afterwards though.

    I've had a rough couple of days. It mostly is related to dreams, though today was a day everything that could go wrong this morning did (luckily my day improved). About 3 or 4 times in my life I have had really, really vivid dreams about health issues. Every time they have come true. When pregnant with my daughter, I had something called vasa previa. Unlike placenta previa, this is rare, and if you rupture and are not delivered within minutes your bay bleeds out. I had to fight to be admitted. I finally was, but kept having recurring dreams about rupturing. One night I had a really vivid one down to the doc who was present. The next night I ruptured and hemorrhaged (and that doc was present). Thankfully they did a crash c section in time. In 2013, about 2 months before found the lump, I started having dreams about BC.On the bright side, I signed up for AFLAC cancer care as a result of my dreams. I was diagnosed a few months later. In January of this year, I kept having recurring dreams of being back on chemo and doing AC then Taxol. Here I am. This week I started having recurring dreams about my funeral...down to who is there, where it is held, songs I had asked the pastor to have them play, etc. I have always had a sense that I was going to die young. I figured it'd be something at work or a freak accident until this BC stuff happened. I've always been able to picture in my mind my son and oldest daughter graduating, but I can never get a picture in my mind of my youngest graduating, which leads me to believe that I won't be around for that. I am hoping for the first time in my life that my vivid dreams do not come true. I would just like to see them all graduate. Anything beyond that is icing on the cake. Anyway, it's just made me sad. It will make me start writing some life tips for various life stages, etc for my kids. I have not told hubby or kids this and I will not tell them. I will watch the weather channel tonight when I go to bed. I am hoping the distraction will help me dream of something else. I try to live each day and not focus on recurring again, etc. I just wish I could make these dreams go away.

    On a brighter note, Taxol 5 was uneventful. My hemoglobin is on its way back down though, so I'm hoping that starts to come back up again; it does explain my fatigue the last 4 days.

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  • StacyMc329
    StacyMc329 Member Posts: 48
    edited June 2015

    KBeee I think my Onco only did an exam the first time I met with him for the consult... But I'm guessing since I only have one more taxol is why he did it today

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  • ThePrincess
    ThePrincess Member Posts: 424
    edited June 2015

    Oh KBeee that would make for rough days- sending internet hugs, we are doing all we can and we will be here for MANY MORE YEARS!

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