April 2015 Chemo Crew... Starting in April? Please join us!
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Hi - some answers and some comments (from what I can remember)
DD2 is nine going on ten (in September). She has always been more difficult - spirited I guess you'd say. I realize that it's only during vacation that I have her 24/14 - usually I'm at work and she's at school. It's just tough to take day in and out.
Gko - I've been having the hand and feet numbness. I think that - as long as you can feel them touch your fingers and/or toes on chemo day, they will go ahead with Taxol, at least that's what happened at my 2nd one. I agree - bone pain/aches have been tough - but, you do turn a point. It's going longer for me this time because of Neulasta.
Addie - that sucks and is so disappointing that your FGFB session was a no show! I totally get how you must be feeling about yourself. My brother showed me a picture he took on the 4th of the room full of family, and I didn't even realize it was me. Thought it was a dude.
I have to say, I am less emotional with the Taxol. I was a crying mess on AC, especially after #3 an #4.
Andrea, I thought we were all staying until we are "done"???? It's called "Chemotherapy - Before, During, and AFTER" for a reason!!! We need to share our post highs and lows.
Stacy!!! Almost done! I hope it goes smoothly, so happy for you.
KB, one more done! The next 5 will go by so fast with summer flying by. I know, easy for me to say :-( But you are doing so well.
samaileko - glad that you found us, better late than never. I really would not have been able to get through this without this group. I learned so much, I was so prepared, and I continue to get lots of support and sanity checks.
We had another great beach day today. I felt better this morning, so I was able to do the morning walk with my sisters. But, it looks like I'm going to lose two more toe nails on the right foot, and probably the big one on the left. They hurt when I walk now. I'm going to try my Tevas tomorrow so that I don't have a shoe rubbing on them. I walked through some tidal pools today on the beach, and I get nervous about what kind of bacteria is floating around in them!
Today I started thinking that I may need to separate from my husband. This illness has made me see that I am not cared for or supported at all. I think I'll start with separating emotionally and physically, then when this is done move on to the more permanent separation. I don't want to live my life (or what's left of it) with someone who couldn't "love me through" this. He says he loves me. He says a lot of things, but he doesn't do anything to make me feel loved or supported. And, he doesn't even really do what I ask without a bid deal or a delay - when he wants to do it. That's always the way it's been, and I accepted it, but now I see that even when it gets tough, he can't step up and be there for me.
Lynne
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Karen - forgot to thank you for the reminder to be grateful. I always add my own daily gratitude when I read yours. Here are some things for which I've been grateful:
1. Home-made toll house cookie dough.
2. Good books
3. The Atlantic ocean
4. Home-made toll house cookies :-)
5. Sisters
6. Chardonnay
Lynne
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I promised you some pictures. Here is the view from my sister's deck:
Here is a picture of the fireworks from my sister's deck:
This is a picture our our cottage. It's a duplex, and we have the top half:
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Lovlilynne: Awesome photos! Looks like a great place to take care of you! Sorry to hear about the toe nails. Sounds painful.
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#28: I'm grateful for visits with friends.
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Steph, my dear sweetie, I'm so glad the effexor is helping. Way to take care of yourself, girl. I wish I could give you a hug and buy you a drink! I've been weepy as hell lately and wondering if it was time to seek help. I admire your bravery in asking for what you need!
Addie, WTF is up with look good feel better. I haven't made it to a class yet, but from what I have been reading, you are not alone! That's total bullshit, and I think the person who didn't show deserves a junk punch. Hiiiiiiii ya! It just sux that we have to roll through a life threatening illness looking like our fat bald uncles. Especially when self care is such a major part of our treatment and staying healthy after. Weird thingnis, with wig, makeup, eyelashes and brows and sexy clothes, we all look hot. It just feels so fake right now, to me.
Lynne, it looks like you are having a beautiful vacation with your family. Sorry your losing toe nails, that sounds painful. What do you think is causing it? Injury? Chemo? Both? Have you tried toe sox? They help my feet because then my toes don't rub together in my shoes..
it sounds like you are comming on some decisions regarding your DH. We are totally hear for you if you need us!
If I forgot anyone, I'm sending good energy to you all for a peaceful nights sleep. We all survived today. We will survive tomorrow too.
On top of that sex just hurts. Sorry. Vagina closed for construction. When's that gonna get better??
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Hi everyone -
Okay, I'll stick around!
Lynne - sorry to hear about the lack of support from your husband. I have been there...in my case it wasn't an illness but furthering my education that made me see how unsupportive my ex was. I finally wised up and dumped his loser ass and life is so much better now! My current husband is truly wonderful...cooks, cleans etc. when I am not feeling up to it. However...it is a very individual thing and only you can decide what the right course of action is. A serious illness is a lot for a partner to deal with. Best of luck to you, and take care of yourself!
Great photos!
I threw up after dinner tonight...first time I had since my first chemo cycle. Dang. Hoping to feel better by Wednesday - MusicFest! Taking some Zofran tonight.
Nite all
Andrea
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Rpayton- forgot to respond to your question re next steps for me. I have my CT sim on July 15 then start rads on the 28th (28 sessions). That means moving to Victoria (an hour away) for 6 weeks because they do not do rads in my little town. That is fine though, we're going to stay with my mom.
After that it's tamoxifen for five years and breast reconstruction at some point. And close monitoring!
Andrea
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Lynn - sorry things are so rough emotionally right now. Only you can decide if your husband is capable of being a supporting partner for you. But make sure he truly knows how you are feeling. My husband, who is quite supportive, went through a difficult time trying to figure out how to handle his own fear as well as provide me with support. His initial reaction was just to pretend everything was fine and let's get on with life as if nothing is happening. Some people think that is just "staying positive" but everyone here knows that is not a workable strategy. It comes across as indifference when that's not at all what the other person is feeling. So a very emotional conversation resulted in the two of us doing a much better job supporting each other.
Right now, our lives are consumed by breast cancer. It's a high-intensity roller coaster ride and it's exhausting for everyone.
Here are some flowers for everyone!
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gko - thanks for the flowers! Your painting is beautiful. I admire your talent. Thanks also for words of wisdom re: DH. Just the thought of a "talk" exhausts me. A lot of what is happening is not new - you know what people say that sometimes a life challenge or trying time makes people rise to the challenge or . . . not - DH is in the "not" category.
Jen - I knew I forgot to respond to someone last night, sorry. I think I didn't know what to say about what your mom said to you - that's a jaw dropper. I guess I'd have to be direct and say, "how do you think knowing that will help me?" I can't imagine she'd have an answer, but if she did you could certainly dispute it. Re the toe socks, you mentioned them before. I was trying to get my head around wearing socks because I'm pretty much in my Croc slides all day. It's too hot for socks. I had been wearing them when I went for our walks because I was wearing sneakers, but today I just wore my Teva sandals because of my toes. Anyway, not having a problem with the toes rubbing together so much, but the socks sound comfortable, so I'll look for them for returning to work and real footwear.
Speaking of work, called the HR department who had me call the insurance company to get my leave straightened out - they had my last day worked as 4/20, so they made my full leave retroactive to then. Grr. I must have told them 20 times that 4/21 was my first treatment, but that I took sick leave, returned to work, etc. I hope they resolve it, I need my 100% pay through this time.
It's 9:02 AM, and DH and I are the only ones awake - he's in the other room watching TV, and I'm here on the computer. Time to get the kids going if we're going to do anything today.
Lynne
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Rpayton & lovlilynne: thank you for your response in my questions on what to ask my surgeon yesterday….turns out I the place I go to doesn't do the guide wire thing with the mammogram and the dye isn't done until I am in the operating room…knocked on out! Instead of a wire placement they inject a "seed" a week or so before…but I think in my case it will be the day of surgery so I don't have to drive back and forth a bunch of times since I am over an hour away….radiation isn't going to be fun doing that every day, but they are trying to minimize my appointments for now for me.
Here is info on that seed https://www.roswellpark.org/cancertalk/201505/tiny-radioactive-seed-makes-big-difference-breast-cancer-surgery
still forgot to ask a ton of things..but i have another appt. with her before the actual surgery...
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Andrea, I hope the nausea and vomiting has ceased...for good!
Lynne, So sorry to hear of the problems with DH. Things such as BC definitely bring out the best and worst in people. I am not sure if counseling is an option or would help, but perhaps it would at least help make your needs known to him in the meantime with someone to guide the discussion. I am glad you are enjoying your vacation.
ksusan, Love your gratitude list. BC does make me realize all I have to be grateful for. The support from friends near and afar definitely makes me feel loved and appreciated.
gkodad, Wow you are talented!!!!! Do you have a website with your artwork, or do you sell it at art shows and such? Your picture is absolutely beautiful!!!!! We go to Venice, Florida every few years in the summer. I just realized you are in Bradenton. I may need to pop up to Bradenton next time, or meet you in the middle somewhere for lunch!
ankledolphin, Remind us again when your actual surgery is.
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Kbeee- not 100% sure yet on surgery date....
so far i know: chemo #6 out of 6 on July 16 (but still need 6-9 more infusions of herceptin)another appointment with surgeon and mammogram and possible ultrasound of armpit on August 3.
thinking surgery on August 17, but they need to confirm with OR and everything else...surgery is going to be lumpectomy and lymph node- but not sure yet if just sentinel or auxiliary..they biopsied one lymph node before i started chemo since i mentioned my arm pit hurt and they did an ultrasound and there it was....a really large node....so that is the only one we really know was positive for cells....
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Hi everyone...
I'm still dealing with the abscess/infection under my arm. I'm improving but progress is slow. I saw the surgeon yesterday and he drained more fluid, but this time he said it was clear....a seroma.
I saw the MO last week and she said no treatment until the infection is healed. I see her again tomorrow. I had my first (of 12) Taxol treatment 3 weeks ago. Does anyone have an idea the max they generally will pause treatment? Seems like I've read after so long they don't feel its beneficial to restart chemo.
I think of you all often but have not been up to being online much. I feel like I'm totally out of the loop with whats going on with everyone....I hope that you ladies are doing well.
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Lynne, that sounds difficult. I'm sorry your husband isn't rising to the challenge.
GingerChi, I'm sending good vibes your way.
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Not the day I was expecting. A driver in the left lane next to me decided to make an abrupt right turn, no signal, no thought and sideswiped driver's side of my car. Did my best to avoid it and it could have been much worse. As I had traffic in the right turn lane next to me and traffic at the cross intersection. Thank goodness no one injured. He was issued ticket. I have a driveable car and damage is repairable, just aggravating. Afterward just kept thinking than God the airbag did not go off. With the port in my chest I think that would have been really painful. Yikes!
GingerChe: Thinking of you. Hopefully the seroma means things are healing. Trust and faith in your oncology team as to treatment steps. Get well fast!
Lynne: Sorry to hear about the relationship issues. What I remember hearing in a Cancer 101 class was that the support you expect to be the best doesn't always go the way you think. Truly hard to understand at such a difficult time. I agree with Kbeee on the counseling. Sometimes just having another party listen to both sides is a good idea for your own piece of mind.
Gkodad: Wow great watercolor. I have been a watercolorist too but haven't done much recently. You may have inspired me to pickup the brush again. Started with crochet when I was working as it was just easy to pickup and meditative thru my son's teen years when I was a worrier. Those years prepared me for breast cancer that's for sure! LOL You learn how to let go, let God and live in today.
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Kbee - let me know when you're on your way through to Venice. We'll definitely meet up for lunch. I don't have a website, mostly just do art shows in the area, but was planning to get serious about marketing some work when this little BC thing reared its ugly head. Hopefully, I'll be back on track soon. I made it to art class today, even though I had to limp in on my painful Taxol toes.
RPayton - sorry about the car but glad you're OK. I think an airbag to the port could be a serious issue, so glad you didn't have that happen. Pick up those watercolor brushes and get to work!
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RPayton--Whew! Glad you're okay. I was worried about airbags the whole time I had the port.
A question for all of you--My vitamin D is usually in the normal range. It went down while I was in chemo and spent no time in the sun without 50 SPF. My oncologist increased me from 1000 to 2000 IU daily. She previously had mischarted me as taking 5000; we corrected that at my last appointment. With that dose and now spending short periods in the sun without high sunblock, I'm back in normal range. She wants me higher, though, and told me to go from "5000" (which I've never taken) to 7000 IU daily. I let her nurse know that it was 2000, not 5000, and that I'd be happy to go to 3000 daily (there's conflicting evidence about higher vitamin D levels being protective after having breast cancer), but that 7000 was too big a jump and I wasn't comfortable with that. MO replied through the nurse that she wanted 7000 anyway. I asked the nurse to let MO know that I've increased to 3000 but I'm not jumping to 7000 without seeing if a lower dose is sufficient. I asked the nurse to emphasize that I decline this respectfully with the intention of reviewing it at my August appointment. The nurse said that "you don't need to do anything you're not comfortable with and--well, I shouldn't say anything."
Your thoughts? Jumping 5000 units, especially when 7000 gets close to the kidney stone-forming range, and the research I can locate is ambiguous, and I'm in normal range and willing to increase gradually, seems nuts to me.
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Ugh, ok taxol #4 done. I didn't want the perjeta today because i have an eight hour car ride saturday and I still have D from the first round, so MO says we may just skip perjeta #2, did herceptin today though.
Because I had a reaction last time, 20mg of decadron, benedryl, and pepid ac as premeds.
I have another fever so they did FOUR bottles of blood to culture (including one from fluid sitting in top of port to check there - one was also in arm vein). Also got a chest xray just in case as I also have a slight cough.
WHAT A LONG DAY! I hope everyone else that went today has better luck!!
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Rpayton, Holy Crap! That's scary. Glad you are OK!
GKO, What beautiful flowers! Thank you for sharing your art with us!
Princess, that's a lot of blood- especially when I feel like we don't have any extra! Hope your fever goes away and you get feeling better!
Ginger, hoping you heal up soon! That's just really rough. I don't know about starting then stopping treatment, but after surgery, I had to wait 4 weeks due to complications to start chemo. I was freaking out, and my MO said there is about a 3 month window to start chemo. Don't know anything further than that, but it seems like you are well within that window...definitely worth asking!
Hope everyone is having a better day today...we all gotta be getting SO CLOSE to the finish line (gulp)...
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Catching up...
Renee - thank goodness you are ok! A car accident is terrifying!!
Lynne - that sounds so challenging, I wish there was we could turn that around for you. We're always here to listen.
Ginger - i don't see why they wouldn't continue w/the taxol whenever you're finally ready? Let us know what they say!
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I'm sorry I haven't written in a while. Sometimes, I just avoid everything - but it doesn't work there's not a moment in the day when I'm not keenly aware that "I have Breast Cancer". It would be nice to escape it.
This Friday is another Taxol treatment and then I will have one more - my last Chemo - on July 22nd! I'm starting to see the end in sight. Since I did neoadjuvant chemotherapy - chemo before surgery - I'm going to start meeting with my surgeons - breast and reconstructive and after that of course Rads.
The side effects have been a little better with Taxol than they were with AC. Still some nausea - and bone pain from days 2-6 post chemo - but neither one are unbearable. Just enough to make me feel a little under the weather, and to remind me that I'm not well.
The chemo has shrunk my tumor, thankfully. Originally it was 4 cm - walnut size - hard and easy to detect. Now we can't even feel it. Even if they say I'm a candidate for a lumpectomy, I'm feeling pretty committed to BMX with recon - just for my mental health. I have moments when I'm reasonable - but too many when I'm an emotional wreck. Does anyone else feel that way about the BMX?
It's nice to know I'm not alone here - but I wish all of you nice ladies were not dealing with this either. Take Care. xoxo
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#28: I am grateful to have cats all over the place.
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Right now I extremely grateful for a fan blowing on my face and my Ac going. These hot flashes are insane. Damn this chemo pause!!!!
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omg! Amen Addie!!!! Keeping me u too!!!! Xo
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Wow, I'm behind! I had a crazy busy day yesterday!
Addie, I agree...3 cheers for AC and fans! I was at my daughter's swim meet last night and at times it was like a 3 hours long hot flash! I was so grateful to get to my house with AC and turn on my celing fan at bedtime. I notice a HUGE increase in hot flashes if I do not have my ceiling fan on.
Georgie, So glad you are almost done with this phase, and glad to hear the chemo has worked so well.
Princess, I am glad you had no reactions. Because I tend to get a rash on day 2, I get 20 mg decadron each time too (as well as 50 of Benedryl, and Zantac and Aloxi). I hope they find a reason fo ryour fevers, but am glad you could stay on schedule.
ksusan, That amount of vitamin D does sound like a big jump. I do remember my family doctor last year telling me that she takes 4,000 a day.
gkodad, I am so glad you were able to make it to your art class. I truly believe that continuing to do the things we love during this life detour makes it much more bearable.
RPayton, I am so glad that you are okay. That crash sounds scary. Sorry that happened. I hope the vehicle can be repaired quickly. Mostly though, I am glad it is the vehicle in need of repair, and not you.
Gingerchi, I know some people who have done AC then 3 weeks off then surgery then a month off then Taxol, so they had a long break between things. I hope that they get that infection cleared soon. It sounds painful and frustrating.
Ankledolphin, you are soooooo close to being done with this phase...yahoo! I hope all the meetings with the surgeons go well.
I have a crazy week this week and next between kids events and ton of work shifts. I'm hoping I stay healthy and have the energy for it all...so far, so good! If nothign else, it should definitely help pass the time faster!
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Can anyone NOT seem to apply their eyebrows straight???
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Lynne, beautiful pics, btw.....you all inspire me to go on my yearly trip to visit Dad and family in MN. I was really second guessing whether I should even go, cause I'm now on weekly Taxol, but, my kids deserve it, and hell, so do I! Sorry that you are having marital stresses at home. I think you can benefit from counseling, and I wish you and your family the very best. Marriage can be rough! I've been married near 12 years now, and there have been many times I wanted to hit the road, but in the end I stuck it out. And ouch on the toes!
Littleblue, are your eyebrows completely gone? Mine have seriously thinned out about 70-80%, but I do try to fill them in. Yesterday, I went out with no makeup on, and I caught myself in the mirror, and thought, "yikes!" Thank God for makeup, man. I looked like a bald (patchy) little man. I'm 4' 11". Yeah, I'm short.
I hear you ladies on the hot flashes! I feel it mostly on my head.
re Vitamin D, my MO has me on 4000 IU because I'm VD deficient.
Gingerchi, hope you heal up fast so you can be done sooner than later.
RPayton, geesh on the accident! Good thing no one got hurt.
I went for Taxol yesterday, it is technically #3, however, since I changed from DD to weekly, I only have 7 left. Well, wouldn't say ONLY. Feels so far away! Infusion went well, it was the first time I went solo, and I ended up sleeping most of the time! Got home at 6....ate like a pig, and relaxed. Kids were at Grandmas for the night. Still are there! Kinda nice having the house to myself!
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I sucked at drawing faces back in middle school and I still am horrible at it. I finally have it so I have happy brows and not angry brows, but I KNOW they are not straight.
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I still have some wild brow hairs hanging on. I actually had to pluck a few weeks ago, because they were all over the place, but hadn't grown. It was more that the actual eyebrow part was thinning, but the stupid stray hairs were not. Kbeeee, I hear you on the angry eyebrows! I think mine look like a groucho marx, don't know why. Like you, I draw those suckers on bright and early every morning so I don't scare myself. Should probably use sharpie, then they would last over night! would make for a less traumatic morning...
Hot flashes seem the worst days 1-7 after taxol...sticky gross tree-sap sweat, too. Not so much flashes as waves of heat. Now I'm like, just take my effing nonfunctional lady giblets and lets finish what AC started..but I'm still waiting on genetic testing.
Ksusan! You should post a picture of your giant cats!!! They sound so cute!
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