Anyone starting chemo August 2016?
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You've had a tough time of it, Barbara. I'm so sorry that you're still having healing issues. Yes, treatment seems to drag on forever. My diagnosis was almost a year ago and I've had another delay on my radiation due to my encapsulated shoulder impacting positioning and a claustrophobia attack.
Cali, I was very emotional during the last few weeks of my Taxol treatment. Others mentioned a similar response so I'm not sure if it was a side effect of the drug or just the impact of chemo dragging on for weeks.
Dara, I'm glad your joint pain is better. That high co-pay must have been painful though!
Lyn
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I thought I was doing a good job of moving on, but the past couple weeks have been stressing me out. I have pain in my upper arm that is unexplained (for about a week now). Feels like a flu shot. I can not get rid of my cough. I had some twinges in my hip yesterday and my neck has been sore. To a normal person, these would all seem innocent and even to me, they are mostly all explainable. I had a virus that is probably to blame for my cough. I had blood drawn, so could that be causing my arm pain? I am still anemic from my horrible return of my period. Everyone has twinges here and there. I regularly see a chiro for my upper back and have not been in quite a while (since before chemo actually). So my head tells me everything is fine, but I can not turn off the little voice that is worried about these things. Could they be the first signs of a blood clot or metastatis? Mets not very likely with having only been stage 1 and the treatment I chose, but having a recurrence after a BMX was also not very likely so I don't have much faith in odds. Blood clot not very likely in my arm, they are usually in the legs. This is not me. I am not a worrier and I'm getting irritated at myself for thinking this way. I did already call my MO office and they did not seem too concerned with my arm pain. My MO nurse already told me (at my 3 mo checkup) to give the cough a good 6 weeks to clear up. I am going to try to make myself ignore these symptoms for a week or 2. After that, if they are still prevalent, then I will push to get more answers. I'll try to shut off my little voice till then. This is such a mind game. It sucks...
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So nice to hear from you ladies. You ARE all very special and I appreciate your input.
Well, I've put off another week seeing my surgeon (whose word will trigger the start of radiation) because I was given "the power" to decide how near completely healed I thought I was. I have cancelled and rescheduled two weeks now and, hopefully this week I will proceed with appointment as scheduled and surgeon will agree that we are finally a GO! I saw my MO last month and he left it to the surgeon's discretion. I live 4 hours from MO and 3 hours from surgeon and 1.5 hours from radiation facility. I'm kind of in the middle of a triangle from all three, actually. Hey, maybe I'm in the Bermuda Triangle and that's why all this stuff is happening to me. Maybe I'm just nuts, huh. What do you think? I'm old and forgetful and really truly could hide my own Easter eggs and then squeal delightedly when (and if) I could find them. Wanta be friends?
VLH, I'm so sorry your journey has been delayed even longer. Hopefully you will be back on target soon. It does feel like forever though, doesn't it? Good wishes coming your way from me. We'll just play tag while others race by, ha!
Dara, I'm so glad you are having less joint pain. That's got to be the pits! You deserve to leave that by the wayside and sprint to the finish.
And Cali--you mean we aren't always on an emotional roller coaster? I can bawl at the drop of a hat and the next minute the saddest thing won't even phase me. It's like my "meter" is off, like way off. I only had 2 of 16 proposed Taxol treatments so I don't think I can blame it on that. Again, it may be that Bermuda Triangle thing. I may have to try that "blame thing" out on some other people and see if it plays well.
Seriously, ladies, I want to wish all of you a blessed Easter. If you worship in some other way, then may you find peace and contentment for your soul in that.
blessings, barbarau
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Hi Dara ... I sure hope DianaRose does not miss out in such a good time. I remember how worried I was & so nervous about going to my nieces wedding and I am so thankful for the good time I had & how many were so happy to see me too! Here my bawled head almost kept me from such a good time.
VLH...I think that chemo reeks havick with us for a long time after.
Barbarau..... Haha Bermuda Triangle is a good excuse to me!! I'm not on any Taxol or anything else since I'm Triple Negative cancer so I can't blame on that 😳
This group is the best support I've had. Wish you all a blessed Easter or at least a relaxing day tomorrow.
Hugs
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Happy Easter to all still checking in here. Does it seem possible that most of us are coming up on 10 or so months since diagnosis. What a year we've all had! Hope you can enjoy a beautiful Sunday and are feeling good. Love you guys. Dara
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Happy Easter Ladies!! Dara- wow, looking at your diagnosis date- you're right! Some of you are quickly coming up on the 1 year mark!! Last year at this time, I was with my mom daily on hospice--- cancer wasn't even in my mind at that time (but was growing quickly little did I know).
I think we are constantly trying to figure out why anything happens to us now including the tears! Barbara I love what you wrote about it, I guess we just have to be ok with it and maybe not try and figure out "why"?? VLH and Barbara- hang in there....this process is long, and I feel like any little bump is just frustrating for me, yours are more than little.
I finally got my first "fill" last week, and no issues there, he's conservative I think with just 60cc fills (I sound so smart, but really have no idea what I'm talking about lol). He ok'd me for PT and to exercise- so I've walked and done a couple of slower hikes. PT was really to get range of motion back and education on lymphedema. Well, the lady measured my fingers, hands, and several spots on my arms. My cancer/lymph node/ and what is my non-dominant arm - is slightly larger! ERRR. I would have never considered that I was having any swelling, so I'm thankful I got in. So she knew I had a sleeve already from my blood clot, and said I need to wear it daily again (no!), showed me some manual drainage moves and a couple of stretching exercises. Me- "so how long should PT be for me?"- PT "oh twice a week for about 3 months". what?!!! Geez....more appts- who's sick of appts?!!! Me lol. Between me and my daughter, it's non-stop, but it will continue.
If you had even 1 lymph node removed, make sure you're educating yourself on lymphedema....it can happen at any time to any of us.
Ok....enjoy your day ladies!!
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Kelly, I've never even been measured regarding lymphedema. Did your MO or BS order the PT?
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Just wanted to pop in and wish you all a Happy Easter! I agree, it's been one heck of a year. May 6th marks a year since my surgery. Thankful for all your support. As you can see my "chemo curl" is going strong. Pictured with me, my two beautiful nieces
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Dara... My BS set up for me to be seen by her Lymphodema therapist in her office who found a seroma just below my lymph noid incision. I also have some scar tissue tentacles sprouting out from the seroma... All kinds of fun crap to happen to us after surgery and radiation.
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sensitivehr ....love the picture... I'll post one with my DH & son Andrew on Easter
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Adorable Cali! You even look younger than in your original profile picture! Way to rock the new look!
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Sensitive love the curls! Cali- agree with Dara! Love the looks ladies!
Dara- I had asked the surgeon for the referral. I had read about it on the boards, and wanted to make sure I was educated. Its now needed since I was delayed over a month of doing anything, my range of motion is hindered. Plus I guess we bmx'rs naturally hunch, so my shoulders, etc are all off. I had 2 BC friends ask me if they need sleeves for flying, my PT said yes to be safe. So just something we all need to be aware of if any lymph nodes were removed.
Took my daughter and a friend to Universal Studios yesterday....long day, but we had a good time.
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Thank you ladies ... Not sure if my hair will ever get much longer but I'm happy with this.
Kelly ...what a fun day. I haven't been there in years.
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You look fabulous, Cali!
Lyn
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Hope you ladies are all doing well. I had a couple emotional days last week ... I think I'm just tired a lot.
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Hi Cali-Sorry to hear that you've had a couple hard weeks. Hope things get better for you.
Waving hello to everyone else.
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Hi Ladies!
I've been meaning to write, but wanted to not rush a post. Cali- I think we're in a weird point....I think mentally we think we should be back to "normal", but our bodies aren't there and then what is "normal"?! I've found that I've realized now what women call "new normal". I keep waiting to feel normal again, and how can I with a foreign body inside my chest. So hang in there Cali- we all have these days.
I actually have a PS appt today- 2nd fill. 1st one went fine, he's pretty conservative on the amount which I'm sure helps. I've been going to therapy- my range of motion is not there, and boy it hurts and then they'll press on the scar tissue and yikes! I wear a sleeve every day, and working/learning about the lymphedema.
Still dealing with my 14 yr old....that's wearing me out more than the cancer lol. Looking forward to summer so some stress is off of her and maybe she'll get back on track. We're getting to school late this am because of her headache.
I hope everyone is doing well.....Dara- any new pots??
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Hi all. Haven't been on lately. Cali, I also had a meltdown last week. Decided I'm just tired of doctors, pain, and being bald! I just want to be normal again (if I ever was normal! lol) Hope you all are doing OK. Kelly, glad the fills are going smoothly. Here are two of my recent bowls. Have more plus mugs and vases in the kiln today. It's keeping me sane!
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Dara those are amazing! The top one looks copper??? I can't even get to work because of appts between me and the child lol. It is interesting how we slowly get back into life. Yesterday I went to work, and then met a friend for dinner. Getting used to the new normal, my arm gets achy so it just reminds me we are still healing.
Up early for a volleyball tournament.....have a good weekend! Oh and my hair is getting wavy...I think the curls are coming.
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Kelly... Your right I must adjust to the new norm. I think since we are back to work and such we are trying to act normal...than everyone expects what we could do when we were what we thought was normal so I guess I will settle for new normal .!! But sometimes I want to say ...hellooooo... I had cancer don't ya know?? Of course most days I just go along like the old normal..lol Glad you doing so well. I was getting Lymphodema therapy and oowww..weeeee... Sometimes that was tender and sore for days after.
Dara ... Those look so pretty ... Glad you can find such a great outlet. My hair is growing sooooo... Slow my hair has some wave to it but not much.
Sensitivehr ....wave back at ya...hello
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Cali- I feel like I have to adjust. I do things at work that are muscle memory and I can't physically do it as well right now. Then I'm reminded lol. Also how tired I was over the weekend...I think my expectations are too high, and I have to give myself a break.
I had my neighbor (male) who really hasn't been in the loop on my recovery tell me some lady he knows "has it worse than me". Hmmmm....really?? I told my husband and he said "what is she dead?" lol.
I agree on the hair too....it came in and now it's at a crawl.
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Good Morning ladies! Me again, just saw this on an instagram post and thought it went along with what we've been talking about. Hope you're getting over the hump of a Wednesday!
as you scroll through your feed, were you aware that this week is mental health awareness week? this is a topic i don't think is addressed enough and can be quite embarrassing and scary to talk about.
mental health comes with a #cancer diagnosis. it's been shown that one in three cancer patients suffer from mental health issues. in many situations- treatment can be hard but what can really break patients is the mental aspect of the experience. 💭"the battle in your mind is actually harder than the battle in your body" -ami blachowiak .
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the problem is that once our bodies are healed the mental battle doesn't end. whether it's #ptsd, #scanxiety, #depression, #survivorsguilt, etc. your spirit is diminished and you lose that fundamental trust in your body that you once had.0 -
wow ...I love that ... Thank you for sharing ... It hits the nail on head or is that the head on the nail...lol. #survivorguilt....so true sometimes. A young man in our area ..25 years has struggled with cancer and when I had my surprise pink heals visit they went to surprise him after ... Well Dillon passed away last month. I know many in his family and I wrote his parents and sent a gift card for meals .. I just felt so bad ... Questioning why I survived and he didn't? Do you know I felt so guilty specially when his sister came by the house.
Hugs
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Hi all. Happy Mother's Day. I hope you all had a wonderful calm Mother's Day. I realized today that tomorrow it will be 1 year since I saw my dr and was told I needed a diagnostic mammo. What a weird feeling. I got the results from the biopsy on May 16. What a totally messed up year it has been. This weekend I finally ditched my wig. It's been getting warm and I basically was just tired of putting it on every day. My hair is still so super short, and I hate it, but feel much freer.
I realize on Mother's Day though just how really fortunate I am to have my two kids, their families, and such a wonderful husband. I'm truly looking forward now, but I don't know that I, or any of us, will be able to completely put cancer behind us!
Kelly, your words are so true. Thanks for sharing it.
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Dara .... You are right ...what a hell of a year!
Happy Mother's Day 🌷 We are all a mama to someone 😍 Or something 🐶🐱🐰 Hope everyone got to relax today at some point.
Hugs
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Hello all!
Cali - your hair is looking great! You do look young!
Dara - I love the bowls. Lovely. That blue is gorgeous.
Kelly - I can definitely relate to mental health issues. April was a tough month for me. I've been really happy to be finished with treatment - but I lost three friends to breast cancer in that one month (first loss since my diagnosis). My dissertation advisor and two other women who were pregnant with cancer, both who have babies under two
I don't have any platitudes. I am so sad for them and for their families. This is a tough disease. When I was diagnosed I felt super positive. I thought I had some ER + (I don't, I am TNBC) and that I was an early stage. But then I realized how aggressive my cancer is (Ki67 is at least 90%) and I had that reoccurrence and then I watched these beautiful women die. When I met the mothers one thought she was in remission for stage 2a and the other was finishing treatment. Within 6 months - gone. I'm sorry to be a downer! But I feel on pins and needles with mets. Do you?
On the plus side - I'll post some pictures
One of my hair and one of my lovely 6 month old chemo baby, Josie!xoxox
Annie
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Annie, your hair is adorable and so is that little munchkin! Was your hair blonde or did you color it already? It's a great length.
I just love Josie's little smile and she has beautiful eyes! Isn't it so worth everything you went through to see that perfect little face looking up at you. But I have to admit, I can't believe she is 6 months already!
Hope everything else is going well. Keep the pics coming!
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Dara- I had to pause thinking you're at a year since diagnosis, we are all coming up on that now and it's just wild.
Annie- I got a knot in my stomach reading about your loss. I don't get that. My KI is high like yours- 90%, I didn't get that at first, took months for me to understand thats why I did chemo first, and the aggressiveness. But thanks for posting the pictures!! It IS a different perspective knowing she's 6 mos old "already"!! Wow- and you look great too! Both put a smile on my face!!
I've been still dealing with my teen daughter who has chronic daily headaches, and now got a mild concussion Sunday night. It feels like it's one thing after another, and Monday when I was just drained from all the appointments I turned on the TV to hear about the Manchester bombing. Ok....this isn't so bad.
Then yesterday, since I couldn't go to work once again because my daughter was home, I decided to go for a walk with a friend. I sat at the light waiting to exit my neighborhood, and I learned from my job to wait a couple of seconds and scan the intersection before proceeding. So I did that.....but continued to scan it as I was going through. There was a car traveling at a high speed not slowing down. I hit the brakes and my horn, and the older gentleman hit his brakes finally at the line. The cars weren't near each other, but boy he would have T-boned me and at that speed I don't think I'd be here. How fast life can change and so I'll be thankful for my man haircut right now and keep moving forward.
Love you to all!
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Annie, I love your hair and that when you smile, you smile with your whole face! So pretty! Your baby is beautiful! I'll bet she is getting to be a handful. Is she moving around on her own yet?
AJB, Yikes, what a scary situation. So glad you were paying extra attention.
My 1 year anniversary came and went without realizing it. I don't really like to put much emphasis on bad days. Best to just ignore those in my opinion.
I've been yo-yo'ing between feeling better and not. Still dealing with a cycle that is not normal so getting pretty anemic which takes a few weeks to rebound from each time. Very tired yesterday and today. I'm going in for a SIS in a couple weeks to see what's going on down there. Keep fingers crossed for me.
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Annie....love the pictures...you both look so pretty! What a little sweetie pie! I am so sorry for your losses that has to make this crazy ride even rougher.
Kelly... So sorry about your daughter. It has to be tough after all you have been through yourself. Thank heavens you weren't in an accident. Every day is a gift.
I had my 2 month visit with my oncologist today...it was very uneventful. Felt so strange to return to the cancer center after a break from being there every weekday for 7 weeks.
I went on a Pink Heals visit to a young lady with cancer that they have discontinued chemo because it's not working. She seemed so frail and when I hugged her she felt like skin and bones. Broke my heart when I've been so blessed.
Hugs
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