June 2011 A/C & T Groupies Unite!

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  • Beaglesgirl
    Beaglesgirl Member Posts: 287
    edited August 2011

    I complained to my nurse on tx day (tues) that i was coughing and that it felt like a sinus infection. my doc was on rounds and my blood count was 3.2 and i hadn't had a fever so they said to 'keep an eye on it'

    ugh. by friday it was a raging sinus infection (no fever) major face pain the congestion cough etc so I called and they called me a z-pack to my pharmacy. Cry I was so dissapointed that it had to get that bad. I spent a very fatigued weekend trying to keep up with kids activities 

    SEPT 27  SEPT 27 SEPT 27 SEPT 27 SEPT 27 

    got to keep my eyes on the prize  SEPT 27  is my last chemo day god willing... then off to rads! 

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    I've had bone aches that are crazy, but was told it's from the herceptin. I woke up this morning with my right foot buzzing.Mysister has a neuromuscular disease and she suffers from the buzzing and burning of nerve pain, so I'm guessing that's the taxol. It's just annoying. I'm with you, Paula, I'm grateful for treatment, but can't wait until I feel well. Today, I am meeting a friend at the middle school. My son is starting middle school after labor day, my daughter will be in 7th grade, and my daughter is helping my friend's daughter and my son with a tour and trying out the lockers. I'll sit in the car and hope my kids don't catch any nasty germs. My sister is taking me to the beach tomorrow. My first outing all summer. I'm nervous and excited!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Rose - they do have a boilerplate and if you are either Stage IV or Stage III with "non-resectable" nodes (for example, intermammary nodes) or skin involvement, then it should be an easy decision.  Age can also be a factor, according to the attorney who is answering questions on the thread I referenced.  If you fall in one of these categories and are comfortable filling out the online forms, you can get it done and submit in just about an hour.    I am not sure you would necessarily qualify just because of positive nodes (for example, a young stage II person). 

     http://www.socialsecurity.gov/disability/professionals/bluebook/13.00-NeoplasticDiseases-Malignant-Adult.htm

     The above is a direct link to the area that should apply in my specific case. 

    Paula - I am tired, too.  Yesterday I started cooking breakfast then I had a sort of "melt down" and had to sit down or I may have passed out.  It was very weird, my DH took one look at me and sent me to the couch.  We ended up taking a nice long ride to the Maine beaches so I would be a captive audience and not be able to overdo anything.   It was a relaxing afternoon.  I am getting ready to head to the store for a few things.  That will probably be my big accomplishment for today!  I have bad knees to begin with, and they seem to be pretty achy, even though I'm taking my anti-inflammatory.  I hate to think how I'd feel without it!   I need to get some generic Pepcid as the Prilosec is not keeping the Taxol heartburn at bay.  What's another pill?

    Michelle

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    I feel like I eat pills for a meal! Lol!

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  • twistedsteel
    twistedsteel Member Posts: 156
    edited August 2011

    Michelle,

    the pill thing... i know, right? i have the tops of the bottles labeled in Sharpie with issue it solves and name. I keep a list, now that I'm on AC and have no brain, of times and names of everything I take. I hate pills. I worked my ass off to "cure" my type 2 diabetes bc i hated taking the pills. Now i have a pill for every damn thing under the sun. stool softeners, stool hardeners... it goes on and one. I cannot wait to do a big liver cleanse when this episode of life is completed. It literally does become... what's one more pill.

    The AC has really thrown my off my game. Walking from bedroom to kitchen is exhausting afte 12 taxol. ah well, whatcha gonna do.

    Have any of you heard of LDN... low dose naltrexone? i am looking at taking it after this is done to prevent recurrence...

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  • Reality
    Reality Member Posts: 782
    edited August 2011

    I know it is different for different people, but I found that the steroids and anti-nausea meds help a lot with the AC. My first time with AC was tough as I was not prepared for the heaviness in my sinuses on the first day. The second time was not as bad as I knew what to expect.

    Taxol is different for me - The first two days after infusion are fine - Then I have three days of intense joint pain and flu-like symptoms - Compazine and steroids are getting me through it.

    I have made it through 7 of my 8 dose-dense 2-wk cycles. Once I reached the half-way point, and could see the end in sight, I celebrated the courage and strength I had gained in those four weeks. I begged for a BMX after my first dose of AC, but am glad my BS talked me out of it. My tumor has shrunk to half its size, so I am feeling very positive about my Sept. 26 lumpectomy.

    You can do it! Best wishes,

    Sher 

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  • Cat123
    Cat123 Member Posts: 296
    edited August 2011

    I had dose dense ACT and finished last March.  I was okay.  Mouth sores....my fault as I had spicy food because I couldn't taste anything.  Some side effects but it was doable although everyone is different.  It goes by faster than what you think.  Put a funny movie into the dvd player and try to get a laugh or two while you are feeling crummy.  It WILL be over soon.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Twistedsteel - yeah, I have Type 2 diabetes, also.  You'd think with the weight loss I'd be in "remission" by now.  My BMI is 22 and for my age, height and weight, I am in the 12th percentile!   But then, I will always want to take metformin considering the clinical trials underway to see if it helps prevent a BC recurrence.  Anyways, I'm taking so many pills that I have to set them up in one of those 14 section pill containers!  Otherwise, it takes forever to open all the bottles and remember when to take what. 

    I looked up LDN - seems to be lacking any scientific evidence, in my opinion.  But then, I'm taking a few supplements that are not 100% clinically proven, so I guess we all pin our hopes on something.  Right now my goal is to get through Taxol without lasting neuropathy.   Once I'm through, then I can stop taking half this crap.  I keep telling myself it's temporary!

    Michelle

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    A couple of you gals mentioned swollen eyelids.  My top left lid is now swollen on the outer corner.  Did it resolve itself eventually or is it sticking around?  Just when I think I've got everything under control...lol

    Michelle

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  • kks_rd
    kks_rd Member Posts: 363
    edited August 2011

    Hi Michelle - mine weren't swollen but more just kind of sticky.  It has gotten better since I switched to T, although I still use a lot of eye drops.  Hope what you're experiencing isn't related to any kind of allergic reaction...

    This round of T has kicked my butt.  I am more fatigued than usual.  The heartburn hasn't been managed with pepcid and tums prn... the pain hasn't been managed with the aleve the PA recommended.  So I bit the bullet today and called asking if they had any other ideas.  The PA consulted with Doc and they came up with a goame pan that involved new scripts.  I'm now on zantac twice daily and they said try to manage as best as I can with tylenol (this was previously a no-no sinnce my liver enzymes were elevated, but this is less of a concern now) and if the tylenol doesn't work, I now have a script for norco.  I am VERY apprehensive about taking pain meds but if it's that or suffer, I'll suck it (the apprehension) up.  I really can't even get commfortable enough to sleep or sit through meetings or anything..the aches are always with me and sometimes I get pangs that take my breath away.  Now is not the time for pride to get in the way!

    I am feeling frustrated by my limitations... although I'm still working 40+ and trying to live as normal a life as I can outside of work... but I feel like I am starting to need to give in to what I am experiencing.  I feel ilke I'm being a big baby!  But I am SO grateful to have a team that listens to and takes my concerns seriously.  It's like being given permimssion to take care of myself, as odd as that might sound.

    So that's my whine for the day.  My spirits are good and I know this is the worst of it - and it's all tempoorary.  There was someone else here who started counting down to the end of chemo and I think it's a grand idea.  September 15th cannot get here soon enough! :)

    Thinking of you, chemo friends.  Hope you all have a good rest of the week!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Kat - I'm hoping it's not an allergic reaction, too.  If it isn't better tomorrow morning, I'll pop a Claritin and see what happens.  I had some aches and pains over the weekend - my knees are already bad and I take meloxicam for that.  But they were screaming at me and I wasn't even giving them a workout.  Then on Sunday morning I was cooking breakfast and had to sit down in midstream.  DH took one look at me and ordered me to the couch, where I hung out until we went for a Sunday drive to the beach.    I'm finding that Prilosec plus Pepcid (generic of both) is finally controlling the heartburn.  It was driving me nuts and I'm glad that it seems to be settling down.   Yeah, your body is screaming for relief.  My friend reminded me that I am performing a full blown assault on my body and I need ot pay attention to the cues for rest.  Maybe it's time for you to do the same Wink

    A countdown sounds like a good idea, my last chemo is 9/28.    Then rads, then the holidays, then recuperation, then finish reconstruction. I think my countdown will be based on my exchange date, unless I get to have DIEP, which seems more unlikely every day.

     Night all, hope everyone has a good day tomorrow!

    Michelle

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  • dsnydawn
    dsnydawn Member Posts: 175
    edited August 2011

    Did anyone take claritin with taxol, like we did for a/c?  I didn't take anything and had really bad pain.  My treatment was on a wednesday and the pain started friday and was really bad sat & sun and went away by tuesday.  My stomach has been alot better on taxol but this bone pain is awful....any suggestions???

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    I did take claritin for a few days.  I had a little pain - my knees were really bothering me and I already take an anti-inflammatory.  It was better by Monday.  Now I'm a little itchy as if I have a small rash on my legs, and my eyelid is a little swollen.  So I took a claritin this morning.

    Michelle

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  • kks_rd
    kks_rd Member Posts: 363
    edited August 2011

    Michelle, thanks for your reply... you are absolutely right about heeding those cues from the ol' bod.  Things at work are slowing down which is HUGE... I also fessed up to some coworkers that it's getting more difficult, and they have assured me they are ready to pick up some of my slack if needed. 

    I tookk claritin too for a few days. Not sure how much it helped but I figured it couldn't hurt.  As soomeone said earlier on this thread, what's one more pill? LOL  

    Dawn, I have had a tough time with pain on T as well.. agree the tummy issues are much better though!  I consulted doc yesterday and they have said I should try to keep on top of it with around the clock analgesics, and I have norco (which I think is tylenol with a small amount of hydrocodone) to get me through the tough times.  I really had an awesome response from my medical team when I spoke up about the pain, so I would encourage you to make it known if you haven't done so already. 

    Friends, I wanted to report that today has been a MUCH better day!  I got relief from the pain and heartburn, and was comfortable enough to sleep solidly through the night.  It was a good day at work and I got out more or less on time.  I got out for a walk on my lunch break and a colleague and I split a lucious dark chocolate bar to get through the afternoon.  I had it in me to make a simple but pretty darn tasy dinner at home tonight, and as soon as my BF is showered we're headed over to a our friends' house to catch up and play dominoes.  A GREAT day in my "new normal" kind of life. Cool

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  • FGCUfan
    FGCUfan Member Posts: 41
    edited August 2011

    My 1st T is tomorrow & I'm definitely going to take the Claritin same as with the Neulasta.  I'm already on a boatload of pain meds but don't want to add to it for bone pain!

    Love, luck. laughter. peace, prayers, & little SEs to all

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Kat - I was a manager in a big telecom company and my advice is to let your team step up to the challenge.  You'll be pleasantly surprised by how well they will perform, and you will get to sit back, watch their successes, and pat yourself on the back for being a great manager with a great team!  And yeah for having a good day! 

    Hugs,

    Michelle

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  • cider8
    cider8 Member Posts: 832
    edited August 2011

    I'm so glad to wake up to no rash!!  It was this time first taxol that I was covered in a very itchy rash.  I'm praying it still doesn't show up.  I also have not had any issue with a burning butt this go around as well.  The bone and muscle aches have been fierce though.  It is intense and the claritin doesn't seem to help much.  Days 5 and 6 are the worst, 7 & 8 are diminished.  I also have such muscle tightness and soreness.  I had PT day 7 and she couldn't believe how tight I was.  I keep doing my stretching each day; it's a relief to do them because I get so tight.  I'm still frustrated by what I can't really do.  My red blood counts keep going down, too.  I was hoping they'd go up on Taxol.  My MO said they'd just stablize, but no they are down.  It's sure in line with how I feel.  I can do more than when I was on AC, so that's a positive!  

    I've had no hair regrowth, nor any more fall out, with the exception of my eyebrows.  Oh wait, the hair on my legs is still growing but more fine.  I'm still fumbling with drawing on my brows; they are about 2/3 gone now.  Brow hairs keep falling out.  Still have my lashes.  My head has the same very short stubble since I buzzed it mid June, though that stubble is very sparse.

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  • ssmith37
    ssmith37 Member Posts: 65
    edited August 2011

    Hello all.  I haven't been on here in a while, but am trying to keep up with reading all of your posts to keep tabs on how you are all doing.  It seems you are doing much better on Taxol than AC.  That gives me hope!  I have my last AC treatment this morning, and I am so thankful!  I just almost quit after my third - it really kicked my butt!  So, I'm off to say goodbye (hopefully forever) to the Red Devil!

    Hang in there and stay strong!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Hi Stephanie!  So far I agree that Taxol is easier, but don't be surprised if that last AC takes a toll.  I was extremely fatigued for about a week, then I started to rebound.  My biggest complaint so far is definitely the heartburn/GERD and I finally added generic Pepcid to my pill army.  I'm happy to say that it has helped a lot. 

    Paula - I am with you on the hair situation...no more fallout on my head and the stubble remains.  The brows are very sparse and I'm filling in with powder.  I hope just enough remains to give me a clue where to apply the powder.  It does look pretty natural.  I've lost a few lashes; I just put on some mascara and I saw a few more remaining than I initially thought.   My bone pain has gone away, it was uncomfortable for just a couple of days.  And most importantly, so far, I am not feeling very much neuropathy, just a tiny bit of tingling in my feet when I am lounging...and I noticed that during the last couple of ACs. 

    All in all, so far Taxol is "doable."  I hate this word, because the human body is incredibly resilient and pretty much anything is doable if it has to be.  I've always hated to hear people use the term when talking about going through chemo.  But, now that I'm more than halfway through, I can see why someone would say that chemo is doable.  I guess if it doesn't kill you, it's doable!  Tongue out

    Michelle

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  • ssmith37
    ssmith37 Member Posts: 65
    edited August 2011

    Hi Michelle.  Well, I have been fatigued for a week with every treatment.  Literally down for 6-7 days straight with hardly the energy to use the restroom!  I just met with my oncologist.  He is going to reduce the Cytoxan by 25% to hopefully give me some more energy.  He is also going to give me a patch to help with the nausea.  So I'm thinking this final AC won't be as bad, thank God!  I just learned also that I will have 12 Taxol treatments.  I was under the impression I was only going to have 4 Taxol treatments.  Great!  3 more months.  But he said, and you guys have said, that Taxol isn't as hard - it's "doable" - I hate that word too, lol!  Yeah, peeing is also doable.  As far as the heartburn, Zantac 150 has been a lifesaver.  I take it twice a day after my treatments until the heartburn is gone!

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    Just checking in. After a 2 week fight, the insurance company approved my switch. I'll be switching to Dr. Mehta of Abington Hemo-onc, and having Abraxane and Herceptin at The Bott Cancer Center at Holy Redeemer Hospital. No premeds, and praying no nausea as well. I'm anxious to see what my WBCs are. They were low with my last treatment.

    Stephanie, Glad Ac #4 is complete! I'm sorry you have to continue chemo, and hope it kicks some cancer butt!

    Michelle, My eye lids were swollen for a day, the next day the fluid was gone, but I have a maroon/purple line above my eye lashes (almost like a bruis). They've thined tremendously as well.

    Kat, I don't think I could have worked through this. You're awesome! I hope you have more energy with each passing week.

    Cider, I still have a rash, and bone pain/achiness that at times are almost unbearable. I'll still take this over AC (maybe not after 12 weeks, though).

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    I must say I am happy to be doing DD Taxol x 4, instead of 12 weekly infusions.  I actually talked to my onc about it and she thought the weekly schedule was just too much. 

     Rose - my eyelids were still a little swollen this morning and a little itchy, but they feel better tonight so maybe the worst is over.  Interesting about your "bruise"...hope that fades away quickly!  Your infusions should be much quicker with Abraxane and no pre-meds.  My onc said it causes a bit more neuropathy, so be aware.

    Stephanie - ROFL...peeing is doable!

    I had a big test of my energy level today - we had to move my mom into a different apartment in her assisted living facility. DH, DD and DS were all there to assist and I just handled the lightweight stuff and directed traffic.  I was pretty much OK through the whole afternoon, took a couple of quick rests, and we got it done. I'm hoping to be able to go to St. Anthony's Festival in the North End of Boston tomorrow evening.  I think I can handle it for a couple of hours.

    Michelle 

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  • tldrose
    tldrose Member Posts: 39
    edited August 2011

    I just finished my last AC treatment yesterday! I'm so relieved! I am going to my ONC this morning for my Neulasta shot - yuck! I hate that shot, it makes me sick - flu-like symptom,flushing, chills and mild nausea, but I need to keep my WBC counts up..I didnt get the shot last cycle and my numbers tanked and I had no engery! Now on to 4 rounds of Taxol - am worried about it and not sure how the s/e will be - I dont handle bone pain very well and am back at work now! Any adcive or preventative treament I can take?? Thanks and good luck to all as we fight our way through this journey!

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    I was cleaning off the pool deck yesterday, and as I was lifting up a cast iron umbrella stand to move it, it flipped out of my hands and crushed my foot. No brake, but it's swollen and still bleeding. I woke up this morning with 102.4 fever and chills. UGH! I'm now on 3 different antibiotics. Doctor said no more tylenol, and to head to the ER if the fever and chills persist.

    On a good note, after I crushed my foot, I went straight to the new hospital for the Abraxane and Herceptin. I still got premeds: IV Benadryl, Aloxi, and Emend, and 2 tylenol. My blood work was back in less than 10 minutes, and I was out of the doctor's office in less than 2 hours. It took longer to get out of the ER though. :(

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Oh Rose, ouch, ouch, ouch!!!  Hope your foot heals and the fever goes away soon!

    TLDRose - I am doing DD Taxol, will have my second one on Wednesday.  I don't think it was too bad, I had a bit of joint achiness and was a little fatigued, but of course the fatigue is cumulative and might be more noticeable after finishing 4 DD ACs.  And oh yeah, the heartburn, which I have tamed with daily Pepcid in addition to daily Prilosec.  Some people are taking Claritin for a few days to try and tame the bone pain.  I did take Claritin for a few days after my Taxol but I haven't taken it for several days. 

    I am feeling pretty good this weekend.  We went to the North End in Boston last night, walked around a while, had dinner then walked back to the Modern Pastry Shop for cappucino and dessert, then back to the parking garage.  DH offered to come and pick me up but I was OK with walking and figured it would be good for me.  I am hanging in there pretty well for an old chick!

    Michelle

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  • tldrose
    tldrose Member Posts: 39
    edited August 2011

    LuvRVing - Thanks for the info..Fatigue seemed to be the worst side effect for me with the A/C and day four after treatmen was my worst with zero energy..just stayed in bed and slept off/on, Otherwise did okay with the 4 A/C treatment. I'm just worried about the bone pain - I dont do well with bone pain. I have been taking Claritin and Alieve and it seems to help against alot of s/e. My first dose of Taxol will be sept 9th, so I took the day off of work to see how it goes. Ive heard you can get really tired 5-8 days out and I hope I can still work through it! I've also been taking precription strength Prilosec since round 2 of A/C and it has totally helped. I'm glad youre doing well and continue to hang in there! I think I'm doing pretty well for my age too! I've heard the A/C is tough and I made it through..so if Taxol is easier I pray I will make it through too!

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  • ssmith37
    ssmith37 Member Posts: 65
    edited August 2011

    Congratulations on finishing up AC, tldrose.  I just finished up my last AC too on Thursday.  SEs are just now kicking in.  I had to have a nap yesterday and today and, of course, now I'm up at 3:00 a.m. again!  Stupid steroids, lol!  And I feel like I'm starving to death!  I've put on so much weight through this.  I haven't been this heavy since I was pregnant!

    Michelle, I am amazed at your energy level.  It's good for a young chick or an old chick!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Stephanie - thanks, I am surprised, too.  I haven't yet spent a single day "in bed"... that's if you don't count being a lounge lizard on the couch!  And I'm not a sleeper, although I did take a few naps the weekend after my last AC.  It helps that I'm not working and I don't have any little ones to worry about.  DH has been a big help.  I've managed to be able to do the shopping, most of the cooking, laundry and a "half-a$$" cleaning every two weeks, plus deal with my mom's stuff.  Oh and move my mom last week.  OK, well maybe I don't give myself quite enough credit...LOL!  The thing that has surprised me the most is that we have gone out to dinner every Friday (as we have done for decades) except the one Friday night after that last AC, when DH was sick.  I am becoming a cheap date, though.  I can't even come close to finishing a meal, and my latest strategy is ordering just a dinnner salad and then making DH give me some of his meal.  He needs to lose weight so it is my "passive aggressive" strategy to help him...lol!

    Anyone else under the influence of Irene?  We are expecting her bad mood to hit us later this afternoon.  We will be on the east side of the track, so not as much rain but stronger winds.  Right now they are saying 50-70 mph gusts.  We don't have any trees right around us, but I'm guessing we'll have an outage at some point.  We've lived here for just over two months and had two outages already.  We're prepared - borrowed a generator, plenty of food and bottled water.  (We have well water.  There's a whole lake full of water if we need some for toilet flushing Wink

    Time to go whip up some breakfast.  I will make DH's favorite baked apple pancake and some sausage patties.  Mmmm...

    Have a great day everyone!

    Michelle

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  • Beaglesgirl
    Beaglesgirl Member Posts: 287
    edited August 2011

    I lived through the oppressive heat waves so my eye is on the prize... cooler temps next month. tired of getting home from being out with hubby and realizing I have only one brow. Embarassed because  i sweated the other one off.

    Worried for the east coat as I have friends and family there. stay safe... baked apple pancakes  sound wonderful BTW.

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  • kks_rd
    kks_rd Member Posts: 363
    edited August 2011

    I'm on my "good" weekend and seem to be faring well.  Did a bunch of yard work yesterday and today will tackle the lawn after a nap. 

    Just an interesting side effect to share about my fingernails.  As I put moree and moree distance between me and the red devil days of June and July, I see that there are discolored spots in my nail beds that are growing out.  Kind of looks like a old bruises, reddish purple.  If I could figure out how to post a picture I would show you all what I'm talking about. 

    I am very concerned that a few of the nails are loose.  I am struggling to describe it but basically as the nail grows out and approaches the part where the bed separates from the nail itself (and the nail part turns more white), anywhere where the nail bed was dark is not adherent to the nail, there's almost a pocket of air underneath.  So on some fingers there's 2/3 to 1/2 as much area keeping the nail attached.  It's quite unsettling!  Keep thinking I'm going to whack the nail the wrong way and loosen it past the point of no return (and then what - super glue? used to do that when I had acrylilcs).  I also have white marks, almost like rings of a tree, that seem to correspond to each AC infusion.  Can't wait to grow it all out - except with the T, my nails seem to be growing less quickly.

    Of course, up until a few years ago I used to nibble my fingernails, so I'm happy to have anything at all!  Especially since with no hair I am concerned about looking feminine...

    Hope everyone is doing OK today! Hugs and minimal SEs to all!!

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