May 2010 Chemo

Good Morning May Warriors.  I am back after a visit to my Sweetie's house.  I drove over myself! Yeah!  This is my first trip to his house(110 miles away) since my chemo.  It feels so liberating.  One of his friends show us how to do some healing Qigong practices.  I will add these to my daily yoga, and walking.   Leanna  Good luck today.  I know how you feel about being alone for chemo.  I have done it twice, but my Sweetie has been there for all the other appointments.   I hope the A/C goes well.  I agree with Sacphotomom.  Take the meds the minute you start to feel any SE.  It helps so very much to get a jump on it.  I take advil, did not find aleve did much.  I have only needed something stronger one time.   Also, it helped me to eat less the day before and the day of the treatment. Leanna and Sacphotomom I got caught up in the Bachlorette too.  I thought, like Leanna, that Frank was the one.  Heck, I think I still thing that.  Nana, How scary about your eye.  I had floaters, about a year ago in the middle of an ice storm. Yikes!  It is good to have you back. Day  I loved your PIC of belly dancing.  I understand about your hair.  Daiva  loved hearing about your tats. I too love the freedom of no hair.  I will love getting some of mine back, but it is very liberating to be free of the hair care.  My hair is very thick and takes a long time to style.  I love being grey, so I do not color it or anything. Paxton Thanks for sharing your story of with us.  It is helpful.  I will support you every way I can to make those life style changes that we all need.  I know I have made some out of fear, but I also believe (at my age) they are necessary to stay healthy and have the freedom to do the things I want to do with the rest of my life.  I love traveling, and I need to be very healthy to do that.   My onc says walking is a priority.  I believe that.  Studies show it reduces the risk of reoccurrences more than some of our chemo drugs. That is pretty strong stuff!  Also remember oxygen and nutrition are everywhere in the studies.  Lets all keep cooking those healthy foods! Day Thanks for the recipes.  I love cabbage. My friends also think I eat weird healthy things. I ate healthy before BC, but now, it is not a choice for me.  Summer   I hope you are all better now. You are so inspiring to me.  Barb  I hope you get to the Extreme Makeover show.  My daughter went  to one in Ky a few years ago.  She received  a hard hat, and got to work some, before a tornado watch shut them down.  Some of you may have seen that episode.  Anyway, it was very inspiring for her. Mel  Thanks for the article, it is great!  This post is getting too long.  May Warriors   One thing I say to my daughter(a quote from Freaky Friday) is "Make good choices dear".  This became a ritual with us, when she went away to college. It continues today(she is 25)  It covers everything,  and is shorthand for a long list of things that I hope she will remember.  So for all of us, I hope we remember that every choice is one that  can supports health and healing.  That includes the occasional treat(The Bachlorette, chocolate cake , or a day of rest) that is good for our psychological and emotional well being!  

Theresa (see, now I can use your name!! )... I am upset that they moved to San Diego... Roberto was from right here in my neck of the woods... Charleston, SC... so, dang!  Thought maybe they'd stay here for a while... but, you know, Ally needs to be in California for all the 'celebrity' stuff that will come up for her/them!!  Ahhhhh well! 

Sacphotomom - thanks for the tips!  Yes, the nurse told me to start tylenol the day before the Neulasta and to continue it.  I will also be starting Claritin today and crossing my fingers!  HUGS to all of you that had bone pain... I had it for 2 nights in my left hip and it was awwwful!  I don't want to experience it! 

My nurse just called and scheduled me for an Echo before my appt today.  I really hope my heart has held up to this first round of chemo.  I have had a lot of exercise, but not as much as I would have liked to due to not feeling well, and it being so hot here.... plus 90 for about a month now, everyday!  Ugh! 

Miss my DH.  I want to call him, but he is probably still in his interview.  He went to the Pirates (I assume) game last night... flight got in in time for him to walk into the stadium around the 6th or 7th inning, and his hotel was right next to it.  Fun. 

And, Roberto... that was so romantic... but man, that guy is a 'sweater.'  I felt so bad for him wearing a suit in Tahiti!  He was sweating all over! 

Oh, let me go check out page 2 of the posts.... be back in a minute!

Ok guys, I had my "end of chemo" appointment with my oncologist yesterday.

We have discussed various treatment options, and in view of that, he had ordered some tests done for me. He wants first to make sure what exactly is my "stage" in what concerns the menopause, if the chemo had really pushed me into it or not. Then he wants to know how my bones are. And of course, he wants to have the PET scan to check on everything.

So, yesterday I had blood drawn for FSH levels. Next week, I'll have a DEXA scan and a PET scan. So until he has all these factored in, we cant' take a decision really. We have discussed pros and cons re: ovary suppression/oophorectomy, AI or no AI, even Evista (even if I had invasive). He wants to take Tamoxifen out of the picture for me due to the family history (blood clots, colon cancer, uterine cancer). So I guess we'll have to see.

On the other hand, my CBC blood count was "picture perfect" (his words) and the general physical exam was great (lungs sound perfect, so does heart, normal abdomen, and normal etc's).

Are you guys aware we are supposed to have a coronal ejection hitting the Earth today? So if you lose cell phone signal and even electricity, don't worry, apparently the geomagnetic storm wont' last more than a few hours. I hope not, we got this horrendous heat wave here, I dont' know if I'd survive without a/c in a 104F weather!

Hugs all

Day

Leanna:  Good luck today with your first AC.  You are in my thoughts and prayers.

Sacophotomom:  could you send me the crock pot recipes too.  I am hoping to use my crock pot more this school year.  It is going to be crazy with school, work, rads, sports.  I think I better get a a lot of recipes so that my kids get to get something more than fast food and pizza.

Barb

Redbarb, I sent the recipes to Leanna via e-mail because it's a pretty large attachment. I'd be happy to send them to you, and anyone else who wants them. Just PM me your e-mail address. As I told Leanna, I haven't tried them so I can't vouch for them but there are a ton and all of them have Weight Watchers points assigned to them (I had done the program prior to dx).

Summer aka Theresa

Day: I just read about the coronal ejections hitting sometime tonight or early tomorrow morning.  I didn't think about losing cell phone signals or electricity because of it.  Thanks for the heads up.

Barb

Okay, I'm trying to keep up with all the posts via my phone - it's amazing how much is covered here in 2 days.  I'm in San Diego with DH and loving my down time - walks, lots of reading, scrabble, etc.  No kids makes a big difference.  I'm cracking up about how much I learn from all of you - like mouthwash and baby powder to get rid of ants!  Love it!  And Day - love the hair formula tips and Romanian cabbage recipe - will try it when I get home b'c I have to use up my cabbage.

Njbhwgirl~ it would be fun to hook up in Monmouth!  Any word on lung x-ray results?  Re; exchange - my PS thinks that DIEP is best way to go, though I'm leaning toward gummies and taking the chance that I won't get contractures due to rads.  Lots of info out there!  

Leanna~ will send you a good pork chop recipe for crock pot if you like chops.  We're with you in spirit today!!!!!   You always get so much done before chemo - organizing, cleaning, etc.  I should be more efficient when I get that boost from the steroids.

Paxton~ thanks for sharing your journey.  I find it interesting that you weren't so freaked out because I think it would be SOOOO tough!  Re: hair coming back - I'm freaking out b'c I see white hair coming in - NOOOO!  I want to shave it because I can't see walking around with a white/gray crew cut :-(  How long did it take the first time for color to come back?  Also, Gage is precious!  What a gorgeous child!  And the cake looks delish!  I immediately thought of Day and how she would have liked a piece :-)

Summer~ your fever and bone pain sound all too familiar!  except I didn't have to go to ER.  Hope you're feeling better.  My TE aren't so bothersome right now and I have been able to lay on my stomach for a little while now.  The massages have been wonderful!!!!  I'm going to PM my e-mail as well, would  you mind sending me the recipes too?  I am meandering to the mall today to buy a bigger pair of pants - :-(((((((

Judy ~ so sorry about the eye.  And 80/37 - yikes!  How are you feeling now?

Patricia ~ thanks for the reminder about good choices and occasional treats.  My definition of "occasional" needs to be looked at.  Walking is really that good?  Do you push to go fast or just to keep moving for a certain amount of time?  Did some yoga yesterday and it really worked out some kinks and stiffness.

Redbarb~ I'm right there with you - ups and downs emotionally; lack of sleep, exhaustion.  I think I'm going to try extended release melatonin to see if it helps with sleeping through the night.  The social worker at my onc.'s office said the transition at the end of chemo can be tough for many people.  DancerMel's article sure confirmed it.  Do you meditate ever?  I wonder if that could help - get your hands on some good cd's maybe.  We're all in this together - you're not alone.

DancerMel ~ thanks for the article.  How are you doing today?

Drim~ -20 degree caps - talk about brain freeze!  Did the caps hurt?  Glad you were able to keep your hair - yay!  I find when I wear my wigs I get angry.  I'd rather wear a baseball hat and be bald.  Something about the wigs that bring up something in me.  Can you not dye your hair?  It makes sense it would be dry...  all the drugs coming out through the scalp and into the hair.  

Sacphotomom ~ hurray for the nubs and no neulasta!  It's funny, my nubs are freaking me out because they're white/gray and I want to shave them off.  Too bad we can't jump straight back to a good head of hair.  

Day~ can't wait to try your Romanian cabbage - it sounds so much like what my mom used to make.  Lithuanian and Romanian cuisine probably has many similarities.  Have you ever tried "Ayr" nasal gel for your nose?  I get it at the grocery store and it really helps with the dryness in the nose.  Yea, if I had gorgeous waist long silky hair I'd miss it too!  I love the pic!  Gorgeous!  So where in the world does one get walnut and pecan leaves?  Most of us don't have them growing in our yards - boo hoo!  Hope you don't lose AC today.  I guess you can go for a nice drive and hang out in the air conditioned car...  Stay cool. 

Njb- Dr. seems to think it's from the Taxol and so do I, can't imagine what else it would be. My pain seems to last for about a week, starting about 36 hours after treatment. I do think a week is kind of long but hey... I'm special!

Yeah for treatment #7!!!!! Good luck

Hi Girlfriends!  I've been busy at work ~ still part-time, but I need to have a practice to come back to, so when I feel good, I really push myself.  I suppose that's not such a good thing ~ I actually broke down & cried at the end of a very difficult custody conference (not in front of anyone, just by myself).  Anyway, I spent the better part of today catching up with everyone, which I would much rather do!

Nana:  How terribly scary for you ~ I hope everything resolves quickly and successfully.  Paxton:  Sorry to hear about your hx.  I can't imagine having to go through this a second time.  Your little boy is adorable, though.  Thanks for posting his picture!  Hope you enjoyed your visit with your dad; glad you spoke w/ your onc about Avastin.

Barb:  Glad you enjoyed your vacation, but sorry to hear about the upcoming test.  Here's hoping for clear margins, & YAY on finishing tx.  Cleob: Thanks for your wise & comforting words.  Day:  Thanks for all the info & the links, esp. the one on the immune system.  Congrats on your last tx!  DancerMel:  Thanks for the article ~ I really appreciate it.  Packjen:  Great news about Casting for Recovery!  Can't help w/ the hot flashes, but I totally get the ups & downs.  Banana splits for dinner certainly sounds like an up!  Kim:  I loved your post about bare ass dancing on the deck!  I also took to heart your comment about reminding yourself to LIVE life.  Congrats on the last chemo!

GolferGirl: I think you started rads yesterday, & JennyB:  I see you also are starting rads. Hope it went ok for both of you.  GG:  Glad to hear you'll be here through rads, drugs, etc.  Drim:  YAY on getting the insurance issue resolved.  Please keep us posted on how you're doing.

LibraryJenn:  I understand your angst about the stage & grade.  I worry about those issues, too.  It was good to hear about all the cooking and other good things you're doing.  Congrats on finishing the AC.  Sacphotomom:  Love that quote!  I agree with your Irish husband about potatoes ~ nothing better!  (Although my Italian side loves pasta too!).  Sorry to hear about the pain you've had & the emotional crap ~ I know what you're going through.  I'll be here for quite awhile ~ chemo til end of Aug & then rads starting the 3^rd wk in Sept., so don't worry about when your treatments ends.  We'll still be here!

Patricia:  WOW ~ your Jan. trip sounds awesome!  I love reading your posts, & really admire your commitment to getting & staying healthy.  I also loved your comment that "[w]e are all more than these damn treatments."  Beautiful! 

LauraM:  I hear you about the really bad joint/bone pain after your 2^nd Taxol tx.  I had some after the 1^st, but I just had my 2^nd on 07/29 & it's def. worse this time.  Leanna:  Congrats on ending the Taxol.  Here's my 2 cents on AC.  My biggest complaints were fatigue & the GI/mouth stuff.  Nothing tasted right, & nothing got processed right (constipation, diarrhea, etc).  Days 1 & 2 were ok ~ steroid high!  Days 3 & 4 were the worst for me.

Daiva:  Hope you get in to the Casting for Recovery & that you had a great time in San Diego.  I love that town!  Also, thanks for asking about the neuropathy.  My onc prescribed Neurontin, which helped a great deal.  I still have tenderness in the fingertips & a little loss of dexterity, plus, after Taxol # 2, my feet hurt.  However, it could be worse.  I'm sorry to hear about the UTI ~ hope it's resolved soon.

njbhwgirl:  How awful that you had to go to the hospital.  How are you doing now?  I bet that granddaughter gives you lots of pleasure, & distraction from all this nonsense.  Re the Casting for Recovery:  There's no way I would share a room with anyone now, esp. a stranger, so I understand your reluctance.  On a positive note, if you're still serious about the get-together, count me in!

Summer:  Sounds like we're on the same schedule, & I don't mean just the Taxol infusions.  (My 2^nd was on 07/29 (onc moved it up a day because she wasn't going to be there on Friday, the 30^th.  My 3^rd is on Friday the 13^th ~ isn't that ominous?! ~ & the 4^th and last is on Friday the 27^th).  On Friday, the 23^rd, my ankles swelled up twice their size.  I figured it was the strappy, sexy, gold shoes I wore to a wedding that night!  Not so ~ by the time I saw the onc the following week, they were like elephant feet!  She said it was a Taxol SE & gave me a script for Furosemide (generic of Lasix), a diuretic.

BTW Daiva, Pat48 & Summer:  I totally get the snappiness & impatience, esp. with the significant other.  The last few weeks, my husband just grates on my last nerve!  I know ~ it's not him ~ it's me!

On the issue of mortality and "hurt feelings" as Patricia described it:  My Italian grandmother lived to age 97, & my Irish grandmother was 88 when she died (many of her sisters also lived into their upper 80s).  So, I always envisioned a long, relatively healthy life.  Since getting the BC diagnosis ~ & mine was really advanced by the time I found the mass ~ I've thought a lot about how much time I have.  Will I be an old lady when I finally go, or will this do me in long before I expected?  Seeing and hearing about survivors ~ some who are out 20+ years ~ is comforting, but there's still that "thing" lurking in the shadows, & it's very scary at times.  I've not shared these feelings with anyone ~ not husband, family, or friends ~ because I don't want to upset them, so I'm grateful, Daiva, that you had the courage to bring up the topic, & I thank everyone who has weighed in on the subject.

Summer suggested a rule that we all keep coming here, & many of you seconded it!  I wholeheartedly agree.  I really would miss you guys!  Have a good rest of the week.

Hi All,

I just have a few minutes to post before my BF picks me up for the gym, but wanted to say hi to all!

Leanna- hope AC was uneventful for you today and your side effects a minimal.

Summer- I would love the recipes with the weight watchers points.  I'll have to scroll back for your email.  I did weight watchers 2 years ago and it worked til chemo added 12 lbs back!  Hoping I don't have to do it "officially" again and can just lose it myself by eating smart again.  Thankfully, it seems my appetitie is finally settling down, though I do think it is still a little bigger than before.  Just not overwhelming anymore.

Nanaof2- very scary stuff on your eye and heart rate! I really can't believe how low your heart rate was!  Hope both are better now.

Drim- have fun in Peurto Rico!  I am so jealous!  I would love a vacation but don'thave anything planned yet.  I'm also always late for work, so I get that!  I'm not late to much else, but somehow seem to always push it at work.

Day- Wow!  Great pic.  I wish I could grow hair like that but mine gets thin and straggly and doesn't seem to grow much longer than it is right now.

DancerMel- thanks for the article!  I just printed it so I have some bedtime reading tonight. 

I've had 2 rads sessions so far, and they are no big deal.  Took me longer to change today, I swear!  I'm relieved its no big deal so far and I really like the new clinic I am going to.  Not the same clinic where I had chemo; I decided to go to a clinic closer to my work for rads, and luckily its really great so far!

Ok, my ride is here.  (((HUGS))) to you all!  GG

Golfergirl - Just send me a PM with your e-mail and I will send over the recipes. Anyone else who wants them too! I'm glad your rads are going well and that you feel good enough to go to the gym! Good for you

Packjen - I will be having rads with TE's too. I still have 2 more Taxol but then on to rads. I'm a little worried about the TE's, I hear there's a good chance of issues.

Hey May Warriors,  Today it is 100 degrees in Ky!  I have been outside three times, once for walking, at 7:30 am, and two times for errands.  I am pooped. My Sweetie is coming today, and will go with me to treatment tomorrow. Cross your fingers that eating red meat plus an iron supplement, has prevented a decline in  my red blood cells.  Daiva, hope the walking works for you.  It is really the best exercise for me, along with yoga.  They really complement each other nicely.  Irishtess I used to do custody evaluations as part of my private practice and it is really tough work.  Be sure to do plenty of nourishing things for yourself.  It is the only way I survived. Leanna, I hope your treatment was okay and that you will be back with us soon. Summer I have pain from the taxol that lasts from day three until I go for the next one.  Luckily, I am able to keep moving with it.  Sometimes every part of my body has shooting pain, even the bottoms of my feet And  BTW,your are special!  GG Glad the rads are going okay and that you are getting to the gym.  Wellsey Thanks for the tip @ taste buds. I am going to try it tomorrow. I am so tired of everything tasting like cardboard. Sacphotomom I love camping too.  I can't wait to go  when it cools off  a bit and I feel better.  I hope you get to go soon! NJgirl  Hope your treatment went well and YEAH for only one left!  I hope everyone has a wonderful weekend.  You are all very special women and very important to me.    

Hi Guys!

back from taxol treatment... went without a hitch  It was my third one...so funny..1st treatment I was not tired for 36 hours. 2nd treatment crashed in less that 24 hrs and now with 3rd one I feel like I am going to crash soon...so strange. with A/C I knew to the day when I would feel lousy....oh well.I asked onc. today if taxol affects the joints that are the weakest. She said yes.In my case it is where my arthritis is. RIght now in left hip and back. I have been taking anit-inflammatory but it doesnt help to much at night. onc. gave me script for vicadin only for night. I will see if it helps. So far I do not have blackened nails though. Guess that is good

Summer: how is your pain level?

Irishtess: Sometime I think a good cry is just what you need to feel better.. I know this whole proces is so overwhelming. glad you were able to write us.  Feel better.\

I just got email from directory of casting for recovery. She states maybe I will be more open to having a roomate next year when I am feeling better and that they could put my name back in the lottery. I think I am going to call her. Quite honestly all I really havet to do is say yes I changed my mind and will go then book my own room and sleep in it. I highly doubt they do bed c checks.(lol) this is kinda getting ridiculous and I think I am going to call her.  I could see if I did not want to particpate in activities but come on it is just sleeping..............

humid humid humid here in NJ today. Going to try and straighten up house before I get the baby. My daughter just had all 4 of her wisdom teeth pulled.. OUCH...

have nice evening

Leanna ask for some Dexamethasone  You would take it for 3 doses...or ask for some ativan/lorazepam....that last one puts you to sleep...I have only had to take it (Loraza) once but I think it was something I ate..yea thats how I felt after AC ..and not wanting to eat was there too..I think that why I din't gain weight and or kept loosing..got in trouble for that..I don't know what kytril is..but I know the Dexa and the Emend work great together..did you take an Emend before the infusion? I used to have to bring them with me and take one after the blood test but before the AC..then 2 more each day after...dexa was one the night of and 2 more the next day ,,make sure you take with food! if I dint take it with food the stomach problems started just hurting .

OK funny  Chemo Brain story....Yesterday I went to the ONC and while I was there somehow managed to loose my sun glasses.. I had sat down where they have puzzles to work I set them down on the table..the other gal sitting there ask to move the table..(it turns like a turn table)  I saw her glasses sitting on the other side  they were grey..When she got called in zI noticed she had  left them on the  table...when was called in I pick up my things  NO glasses.. I thought oh no she pick mine up so the nurse went and asked her..she said the glasses that were there had been there..So where were mine? Nobody turn any in..so oh well lost my glasses ..

Today I went in the office after my chemo to ask if any one turn them in...they said only the ones that were left there were the ones I found ...the other nurse asked me if maybe they were mine I told her no mine are black not grey..she said these were black..So we went back..sure enough they were mine..I never realized that the inside was grey..felt so dumb...lol.  but it was funny at the same time...I have only had these glasses for 2 yrs maybe more..geeze!

Can any of you up north see the northern lights?  Cant see them here  ..I actually went outside this morn to look...nothing ..no I didn't get up for it I just remembered after I went to the bathroom...at 4:30 this morn...I will try again tomorrow..beautiful stars out though!

Good morning girls.

Njb - So glad you treatment went without a hitch. My pain level definitely gets better each day. It's bearable now and not keeping me awake at night. That's interesting that your onc said it affects the weakest joints - the majority of my pain in in my knees and shins with the occasional hip & back thrown in for good measure! LOL

Leanna - I've read that the Taxol side effects differ depending on weather you receive it weekly or DD - you were weekly right? I'm glad you escaped without the bone & joint pain! Yippee for being done with your first AC! I was on the same "regimen" of pills as Sacphotomom. Pretty much always felt queasy but never to the point of vomiting - pleasant right? LOL I had mashed potatoes for dinner after my first AC too!! So funny I hope you are feeling better today! Oh, and by the way.....enjoy those new counters!!!

Sacphotomom - Love the story about the glasses, I laughed out loud!!!