March 2011 chemo-lounge
Comments
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mdg - amazed at the 6 mile run thing - can't run 6 steps.
ksmatthews - I have scar tissue under the mastectomy scar that feels like rock - its about the size of an egg. - they say its normal. I get pain there occasionally. They are not even doing follow ups on the spots they found on my liver before chemo- they say its really common.
lily - you should definitely query the surgical clips - they can use staples or disolvable stictches to close the wound but they should not be in there indefinitely.
kay, silia - great that you two got together.
My Lymphedema is under control - I wear the sleeves from http://www.lymphedivas.com/ while I am at the computer all day and then take it off when I get home, also do lots of arm exercise. Those sleeves look great - I wear one that looks like a full arm tattoo.fluffqueen - bet you'll look gorgeous - hope you recovery quickly - sure the twins will be worth it.
I got the award for best speaker at the conference yesterday - can't help thinking its the award for best speaker with BC though - sort of the sympathy vote. I have won it several time before but this one feels wrong and it really annoys me. Hell its good for my company profile though so I guess I just go along with it.
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Lilylady - Great news! Congrats.
Have lots of other family things going on - not all good so I have not been posting very often although I have been trying to keep up with everyone else's posts.
Found a lump in the same breast as the BC one and got a little scare but it appears to be just a cluster of lymph nodes. Had an ultrasound as the Onc does not want to do a mammo until more time has passed after rads.
ksmatthews - I have had twinges of pain that lasted for several weeks but are now gone. Is this what you are feeling? Very strange sensation.
Penny - Congratulations to you for best speaker award. I get so nervous when I have to do any kind of public speaking and I envy those that can handle it well.
mdg - Good luck on your move. Lately I have not been exercising as much as I should so I will use you and Penny as my inspiration.
Hair - I finally went topless when I was away from home and no one stared. Have quite a bit of hair but it is very curly and I do not know how to manage it.
My eyelashes were growing in very nicely and just this week they fell out again. I finished chemo in May so I was pretty surprised. Has this happened to anyone else?
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Hi girls!! Hope I won't be kicked out of the lounge. Just realized it has been a month since I posted. Spent an hour last night getting caught up on y'all and the other thread or two I usually follow. No excuses, except just lots going on. Most of it good!
I had my first post treatment follow-up mammogram on Thursday. I am 22 weeks PFC (wow-had to go back and count!) and 10 weeks post-rads. I was not worried about mammo...until that day and then I was a wreck. Had mammo at 11:00am and follow-up with surgeon at 1pm. DH went with, and DD2 (nursing student) met us for lunch. She asked me how I felt and I teared up and said I felt like I just took a big test and thought I did well, but then started second-guessing all the answers. You know? Like you just blew it? But surgeon showed me the films, very clear and vivid, and not a speck on the screen except scar tissue around lumpectomy. Whew! All good. Both sides. Next one in a year-like normal people! Hmmm...normal? Ha! I still am suposed to see him every 4 months for two years; RO every 3 months for two years, and MO every 3 months for two years. Really, docs? All you are doing is looking and touching. Couldn't we coordinate a bit here? Surgeon is semi-willing to back off (but not totally) as long as someone is seeing me every 3-4 months, but doesn't agree with an alternating schedule. RO says that his protocol according to national guidelines are every 3 months; MO the same. Only one I agree with is the MO. I was on a clinical trial and it is imperative from that perspective to be seen and followed. I was originally prepared to drop the RO, but now thinking it will probably be the surgeon. But still waffling. Surgeon is the medical director of the Breast Center in Omaha. That's all he does is breasts-LOL I am getting my port removed next Friday in out-patient surgery. Will be sooo glad to be rid of that reminder.
I did get a flu and pneumonia shot at strong recommendation of RO and MO. Have gotten flu shot several times before since I work with so many kids. Pneumonia shot (or pneumococcal) is good for at least 5 years. Will also get shingles shot soon. I have had chicken pox, but also had shingles as a kid, so virus is floating around in there somewhere. Risk of shingles is greater with cancer patients and getting it can be quite serious.
My main issue is fatigue probably, and still more weepy than I used to be, although I have always been moved to tears easily. Have been on Cymbalta since June and trying to wean off that. Did it once but got so dizzy and such headaches. Tried again more gradually and thought I was okay, but having headaches again today. SIGH. But am going to tough this out. I think I can tolerate the headaches for a few days if they don't get any worse. More sleep would help too!
My hair is over an inch long probably and curly and blonde/gray. Looks "frosted", a term my mother used to use. HA! Am getting my first hair cut and color (highlights?) on Wednesday. Have been going topless quite awhile. Other than a few random comments, most have been oblivious to shortness. Will probably keep it short for now. Can't do a thing with curls, even with gel, so hoping a trim will get them under control.
Little Gracie Lu (my Yorkie) is my daily dose of sunshine and laughter. Will try to post a new pic soon.
As for y'all, am glad to see that most are doing so well.
Kymn, sure have been thinking of you lots and following your posts. Maria, so glad to hear about the house! Sorry I've been AWOL. Chrissyw, my eyelashes have fallen out twice, but seems like they grow back just as quickly, because only a section falls out at a time. Makes mascara interesting! Eyebrows have always been sparse and pale. I put a pencil on them occasionally but feel like I have brown pencil on my face! So mostly I leave them alone. Penny, congrats on the award, whether the pity vote or not. You obviously were worthy before and now. Lily-congrats on such great news! ksmatthews, surgeon told me pains and twinges in/near tumor site and breast are normal. Highly unlikely that breast pain will be a sign of more cancer. Twinges and pain are a part of post-rad symptoms for quite awhile. Kay & Silia, good for you guys for getting together! Would be fun for more of us to do that, if we could figure something out. Some long weekend in the spring or summer? Kansas City? Chicago? Not sure where y'all even live, except for Maria in Chicago.I should pay more attention, huh! Who am I missing? Fluff, Sally, Colo, Divine? Sending lots of greetings and good wishes your way. We sure have been through a lot together!!!
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Husker, I am doing great 30 hours past exchange. I was on Cymbalta too, and really liked it. Then I started tamoxifen and I can't take it with that. I tried to get off of it and had those same dizzy flashes. I called them brain farts as they didn't really feel dizzy, just weird. My onc put me on Pristiq to help with hot flashes. I am going to get off that soon too. I can go 4 days and then the brain thing happens again.
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thank you ladies for the encouragement!
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Kristy and Chrissy - great to hear from both of you. So much going on for everyone...
Penny - if you'd never won best speaker before, I'd say maybe it's the sympathy vote. But all things considered I don't think it was - congrats!!
Fluff - kudos on having the exchange behind you.0 -
Haven't been online to read all the posts in a LONG time...it is so good to see everyone is doing well with scans, surgeries etc....we have all had quite a year !!! Enjoyed my post-radiation vacation in San Diego..also enjoyed quite a bit of California wine (haven't been drinking at ALL thru this ordeal)...after returning home, the news carried the story about even moderate alcohol intake being linked to breast cancer...jeez...can't have any fun !!! Had appts at Mayo last week and met with an oncologist there...he agreed with my therapy to this point and said I would be a good candidate for the upcoming vaccine trial but the start date will probably be delayed several months due to FDA regs. His prediction is that the next 5 years will bring MAJOR break throughs with treatment of breast cancer. I'm going back in January to meet with a genetics specialist and a surgeon as I am thinking of having my ovaries out (mom had breast AND ovarian cancer)...the laparoscopic surgery can't be that big of a deal after having a double mastectomy!!!
You ladies are definitely an inspiration to me...
I truly hope we can all keep in touch....please let me know if any of you are in the Minneapolis-St. Paul area.
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Hey lounge ladies. Today is moving day. I am kind of sick of moving by now! I am stuck sitting here while they pack up all my stuff. I think I may br losing my eye lashes again. They seem to be thinning. I know some people lose them more than once afger chemo...anyone else? I finished chemo the first week of May and lost my lashes in July. This stinks! Chemo is the gift that just keeps on giving.....grrrr! I hope they just thin and don't fall out. Going through BC has made me more vain I think.....anyone else?
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fluffqueen: how are you doing post-exchange? I had a lot more pain than I was expecting, but it has decreased every day post-surgery (now 3 days out). The doc said that the radiated skin had a lot of fibrous stuff to cut through, which caused more trauma. Yuck. That said, I am thrilled with the result! The silicone is SO much softer than the saline, and he did a great job matching the other side.
stilts: glad you had a great vacation! I like what your doc said about that next five years. Gives us all hope.
penny: I have an appt to get a sleeve, but I really like the ones you shared; way better look. I don't have LE yet, but I want to be prepared for flying, etc. Congrats on your award, even if there was sympathy involved, you deserve it. You did all that work AND conquered BC this year!
mdg: good luck with the move, I hope you are able to get settled quickly.
Regarding tamoxifen, I have hardly any (none?) SEs. No hot flashes. I used to have a HIGHLY irregular period, and since being on tamoxifen, it's completely regular (it was back 6 weeks post-chemo and has been every 4 weeks). I must have some seriously high estrogen levels--it seems like the tamox brings it into normal range...I hope that's enough to destroy any estrogen-feeding BC.
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I have not had a period since March with chemo and tammi. I didn't think most women got their period back. It would be nice if it stayed away.
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Hi Ladies! We've come a long way in such a short period of time! Lily-I am SO happy for you and the good results you got. I think of you often.
I've been on Gabapentin for a week and a half and had neurological testing on my feet on Friday. Moderate case of neuropathy so I'll be on the meds for a while. They seem to help but my feet still hurt a lot. My exchange surgery date is 12/29 and I'm ready to get it done. My expansion on my prophylactic side was really fast so now that I'm done, it will be nice to have a break from doctor visits for a while, except regular oncologist visit next week. That one always makes me nervous, but I guess I'll get used to it since it will be every three months for five years. I don't have to go back and see my surgeon or my radiation oncologist since my oncologist sees me regularly. That is nice for me.
Maria-I think my lashes are thinning, too. Bummer, because they were actually growing out.
Glad to hear everyone is doing well. I had a great week last week, my BFF came from out of state to visit me and we went to Charleston for a girls trip. It was great and a much needed break for me.
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Maxine - I had a lymphedema clinic appt and then used the measurements they made to order the lymphediva ones, The others that are really comfortable for something like flying are the italian solidea ones (http://www.solidea.com/uk/catalogo_scheda.asp?id_articolo=0433A5SO&id_cat=10) but you can probably find a US site. They don't roll down as they have the opposite sleeve. They don't provide as much compression as the others but I find they are the only ones that stay up when I am boxing.
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I am doing well so far. (knock on wood). Just took a shower and feeling totally refreshed.
I finished my chemo on June 13th, lost my eyelashes and eyebrows the first week of July, and just noticed yesterday that they are coming out again. But it looks like there are little ones behind it just like last time. Maybe they will come in quickly.
Stilts, I am considering a trip to Mayo for opinions also, however probably not until after the holidays and then there will be weather to deal with I am sure.
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Hi gang - I enjoy reading the updates. Today was rads #11 so I'm plowing ahead towards the end of treatments. I'm particularly keyed up to decorate the house for the holidays. I'm sure it's because I CANNOT WAIT to "ring out" 2011!
Maria - Hope you and your family are starting to feel settled in...
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Hey chemo buddies! Glad everyone is almost finishing up with rads. It seems like everyone is moving on - finishing surgeries too. That's great news! I guess now that everyone is done with chemo no one posts so much anymore. I still check in to see what you are all up to.
Thanks Silia. We are getting settled. We love the new house! I am sick of boxes though
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Maria-I bet you are excited to have Thanksgiving in your new home! How fun. I hope you are settled in soon. The holiday will take on a much bigger meaning this year for me. I have always been thankful but I am thankful and appreciate so much more now.
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Hello all,
Haven't been on in a bit. More about that in a minute. First off, big congrats to Lilylady, what a fighter - I'm so happy for you that your are between Stable and NED! What a great place to be
Hoping you figure out the staple/clip thing.Jules - glad to hear you are riding again. I went to my first horse show over the weekend, it felt great to be back doing what I love.
Penny - think you are looking good. I've had people not recognize me, also. It's a weird feeling. Of course my hair is red now, where it used to be blonde-ish, and only a couple inches long. On the topic of color, I have now had mine colored 2X and going next week for a third. She does use the new healthier color on me.
I left out many of you individually, so sorry, will write more later with more time. Work is keeping me busy, unfortunately. I saw my gyn/onc last week for my 3 year follow up with cervical cancer. It went well, he thinks everything looks good as far as that goes. I did have a chest/abdomen/pelvis CT scan Tuesday, but don't have results yet. Although CT scan is not standard of care with BC or CC, after 2 different cancer dx he ordered it for me. My MO didn't want to. Had horrible anxiety before last week's appointment as the 2 year appt last year is when I told him about the lump in my breast, and got on this BC train. So glad it is behind me. My therapist says it is "traumatic association". Anyway, now just waiting on test results.
Take care all, hope you are feeling well and living each day to it's fullest!
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Hi Supersally, nice to hear from you! So happy that your gyn appointment went well and he ordered the scan for you. I tried kale chips tonight. They were good! I hope they will store okay and we'll save them as chips. I didn't even know what kale looked like before seeing a big bag of it at Trader Joe's today and I thought of your kale chips recipe and tried it. Thanks for the recipe!
Maria, congrats on being in your new home! So glad you are enjoying it.
Jules, it's been quite a while since we heard from you. Glad you are doing well.
Fluffqueen, so glad you are happy with the girls.
Saw my onc yesterday for Herceptin. First time I've seen her since my surgery Aug 17. She said my lifted breast was healing beautifully. Seemed to be waiting for me to comment or something and then said, I guess you don't care what I think about it. I really do like her, but sometimes she just floors me. WTH was I supposed to say to that? She didn't mention the poor other breast. It is so burnt red and sore and ugly looking from rads and the scar and the missing nipple. It's probably a good thing that I have no feeling in it. Tomorrow is my last day of rads! Yippee! Did anyone else get so burned from rads? I am not peeling or blistered (RO said that may happen in next two weeks though), but I am bright red. I look like a cooked lobster.
Hope everything is going well for everyone. As others have mentioned, I think about all of you very often and wish everyone health and happiness. I can't believe what we've all gone through together. I think it is almost like being in a war together. Take care all!
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Congrats, Kay ...will think of you crossing that finish line tomorrow !!!! I slathered on Aloe Vera and Aquaphor constantly...actually wore my bra for a few weeks with one strap down so the bra didn't dig into my sore underarm area (if you can imagine that)...got fairly red and a little peeling but it resolved fairly quickly.
My energy is slowly coming back....looking forward to cooking a feast for Thanksgiving and have started putting some Christmas lights outside before the snow/cold hits...only a few flurries so far !!!
Hope you all are well....
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Thanks Stilts! Good for you for getting your Christmas decs up already. Enjoy your holidays.
I am also slathering on Aquaphor several times a day. And I have bought some soft pull over bras that I've been wearing with the right strap down. Great minds think alike. LOL
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Congrats on finishing up rads Kay! One more treatment done. I slathered on olive oil, if you can believe it. I didn't have a bad reaction at all, but the olive oil did help.
supersally: interesting what your therapist said. Last year this weekend is when I developed a pain in my side that got me to the doc and several weeks later resulted in my diagnosis. I have been concerned about these 'traumatic associations' that might be coming up over the next couple of months. I am hopeful that I can just move through it, thankful to be in a better place this year.
colodisney: i think we all have gained a lot of insight in the last year. I know this thanksgiving I will be more more keenly aware of the blessings I have, as you said.
mdg: I hope the unpacking is going well!
stilts: good for you thinking ahead on the outdoor lights! I have only managed to be so forward-thinking one year. Most of the time I am stringing lights through the snow!
silia: I think we will all have a WONDERFUL new year's eve, saying goodbye to this year. What a crazy ride. I hope you aren't having too many problems with the rads.
penny: I have an appt with the lymphedema clinic in a couple of weeks. I will ask about exercising because I haven't worn anything while exercising up to this point (however, I am not doing a lot of arm exercising. Boxing! Wow. I am impressed).
fluffqueen: how is your recovery? I am feeling just about normal. I am surprised how quickly I felt better after a couple of days.
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I rang the bell at rads today. My DH came up with the idea of a pretzel tray to bring. It was very nice, had 192 soft pretzel nuggets, a couple kinds of mustard and some nacho cheese to dip them in. (I'm in Philly and fortunately or unfortunately what it is known for here are cheese steaks and soft pretzels.) The techs were very appreciative of it. 2 of the techs who have been there for almost all my treatments weren't there today. A little disappointing, but they took me almost 45 minutes before my 11:15 appointment, and I think they were coming in at 11, so will get to partake. It's been such a crazy day (in a good way). I was brushing my teeth this morning and the radio was on. I wasn't paying any attention at all. But I hear them announce my DH's full name on the radio and some how that got my attention. He was down stairs, but I called him up. He had e-mailed the station and asked them to play a set for me for the last day of radiation. What a shock it was to me. They played Sheryl Crow Make it Go Away (a song about radiation), Adele Someone Like You (my current favorite song) and KT Tunstall Black Horse on a Cherry Tree (because DH calls me Katie and I loved when Kat McPhee sang that song on American Idol). I was talking a mile a minute at radiation and am usually a very quiet person. I was not expecting today to really hit me like it did. After I was still kind of giddy and high, but when I was in the changing room, tears just started streaming down my face. And it totally hit me as I was leaving and a blind gentleman was entering with someone helping him for his first tx. I showed them how the gowns were all set up in the changing rooms and wished him luck and told him I just finished txs. Went out, met DH and rang the bell as I was leaving. Got a round of applause from the people there. I hope it helped someone. Then went out to lunch with my sister and DH, and the partying is continuing tonight as we're going to a Black Thorn concert and going out to dinner on Sunday with DH, DS and DD. DS has to work tonight and tomorrow night. This almost rival's my DD's week long b-day celebrations.
This was so long winded, thanks for letting me get it all out. I think because I still have to go back to cancer center through May every three weeks for Herceptin, it wasn't going to feel like a very big deal to me, but I was surprised by all the emotion that came out. And I choose to believe I was leaving just at 11:11 on 11/11/11. That has to be a good omen. I'll share the good luck with all of you.
Have a great weekend everyone.
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Oh, and for the jukebox, Sheryl Crow, Make it Go Away
Make It Go Away (Radiation Song)"
I stare into
Some great abyss
And calculate
The things I'd miss
If I could only
Make some sense of this
And Madam Butterfly
Resounds
Over the mothership
Her lights flashing around
I float above her and
I wonder how
To make it go away
Make it go away
I crawl into my circumstance
Lay on the table
Begging for another chance
But I was a good girl
I can't understand how to
Make it go away
Make it go away
Sometimes I wonder
Which hurts the worse
The thought of dying
Or reliving every hurt
Was love the illness
And disease the cure
Make it go away0 -
Hey Ladies,
It's been a couple of weeks since i"ve peeped in. I spent most of last night and today catching up with everyone. So be patient with me..i have a lot to post.
Things are going well with me. I see my MO every two months, i don't have to see my BS for another year. I had my mammogram and it came out fine. I asked my MO when i would have a CT scan or MRI, he said it wasn't necessary unless there was something questionable in my blood work or in the exams he performs one me during my office visits.
Oh yeah, I finally set a wedding date...February 9, 2013. I want to wait until i am done with herceptin in March 2012 before i even begin to plan it. I know it will take at least a year to plan a nice wedding.
Lilylady - PET results..Great news! You have been in my prayers. Yes finishing rads on December 23 will be a Merry Christmas for you.
Mdg - Glad you have gotten moved into your new home. How exciting to celebrate the holidays in a new home. Also, you ran 6 miles...very impressive lady. I am exercising again, actually I am taking a one hour line dance class two days a week, so far so far good :-)
Kay - Yippiee you rang the bell on rads, so glad you are done. You deserve a long celebration. That is awesome you and Silia met for lunch, I'll bet it was like having lunch with an old friend.
Fluffqueen - I am glad your exchange surgery went well. I know the twins rock :-) as you get used to them they will rock even more.
Penny - Love your new pic..you look great. Congrats on the award i'm sure you deserve it. It's funny I've had people i've associated with for years not recognize me too. sometimes when they do realize it is me they tell me they like the short cut better than when i had longer hair...WTH i thought i looked good with long hair..lol
SuperSally - Glad your gyn appointment is behind you and all was well. I pray your CT scan results will be just as good.
Chrissyw - So good to hear you are doing well. My eye lashes are growing nicely, but my eye brows are sooo thin. My hair is growing in thick..which is good. I colored my hair a dark brown color, I like it.
Huskerkkc - I have pain in my mx breast too, sometimes the pain goes from my armpit to my elbow. My MO says everything looks good and I will have some type of pain for several months.
Mdg - I haven't had a period since April. I wonder if it is normal for ladies not to get another period after chemo? I sure hope i am done with that.
Hoping you all have a good weekend.
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Maxine-all was going smoothly until i blew up with a terrible case of gianprmous itchy welty hives all overmyself on Tuesday. Only thing we can figure out is I developed an reaction to either bactrim, cipro or sulfa, as I was on those two antibiotics as a preventative. I took atarax which helped and ps called in a script for steroids. I held off on those and things are pretty much ok now.
Mdg and deedee-no periods here since end of January. Had bmx end of feb. Hope it doesnt come back now. I dont need periods AND hot flashes.
To you rads girls- I didnt have rads but love the aquaphor. I slathered it on the foobs twice a day in the weeks before exchange surgery to keep the skin soft and supple.
Have a great weekend all!0 -
Kay--I got emotional just reading about the end of rads for you. Ringing a bell is such an odd, little thing and what does it really mean? But it sets off waterworks every time I hear it. It signifies moving on. I will have one more shot at the bell when I'm done herceptin in Feb.
Pennycookson--you remind me that I ought to look into a proper lymphadema sleeve. I still have the venous sleeve that I had to take in a hurry before I flew to Europe. But I haven't been using that sleeve all that much. Since we moved past the heat of the summer, my arm feels pretty much normal. The lymphadema therapist still does her magic massage with the vibration machine every month. I have very little swelling in the arm but she says she can feel some congestion around my upper chest and neck. I will keep up with her to track it and to hopefully keep fluid moving.
I'm getting close to D Day--diagnosis day. I had the mammo and ultrasound around the beginning of Nov, my biopsy on Nov 19th, and heard the C word on Nov 29th. I can't believe it has been a year since this started.
We're now going through the same thing with my MiL for pancreatic cancer with mets to the liver. She's now waiting for a biopsy and then they'll schedule the onc when the results come in. It seems to be taking longer for her to get into the system and it's giving me anxiety flashbacks. I remember feeling that no one seemed to appreciate the urgency that I felt. In my MiL's case, it really is urgent. And it's not moving fast enough, AFAIC.
Back to writing my final papers. I'm trying to get everything done asap in case things heat up with my MiL. All three courses are done Dec 4th and then I get a break over Christmas.
It's good to hear how everyone is continuing to move forward and onward. Have a great weekend!0 -
Pasmith, so sorry to hear about your mil. I hope she gets a good pathology report from her biopsy. Geez, sometimes it seems it never ends. Good luck with your final papers and congrats on your anniversary. It's good to get past that first year. And good luck with the rest of your he herceptins. I have until next may for that. And enjoy your Christmas break! You deserve it for sure.
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Congrats, Kay! What a great day!!!
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pasmith - good luck with your final papers - sorry about your mil, one minute this thing is not part of your life at all and then all of a sudden it feels like its everywhere.
congrats on setting the date DeeDee - have fun planning a wonderful wedding.
Glad you are done Kay -, what a wonderful celebration - love your DH
I have started writing a book ( don't know if I will ever get round to finishing it - only done one chapter so far). It is a comedy about all the funny moments associated with the last year - one chapter is going to be "The things people say" Can I ask you all whether you would mind if I use some of the things you have written about what people have said to you? Obviously no identification but some of them are priceless.
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Penny, I think the book is a wonderful idea. Not sure if I've posted anything here but there is a thread called the stupidest things people have said to you. I don't mind at all if you post anything I said. The thing that still bothers me the most is the onc telling me I am going to look 25 after the flap surgery as if it were just the best thing in the world. And I really like her, but that made me mad. Good luck with the book, I think it's a great idea.
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