Jan 2008--Ain't it Great?

TGIF ... looking forward to a sleep-in tomorrow.  Good night for an extra Lorazepam!!!

Just got my mail, now my insurance co has me spun up again, they denied my request for a compression sleeve.  It stated I don't have blood clots, severe burning or lymphedema.  No SH*T!  I requested the sleeve to "avoid" an onset of le, especially since I had 34 of the little node buggers removed.  I guess they aren't really into a patient being pro-active with their health.  I'll be fighting this one, not because of the cost of the sleeve but for the principle of the matter.  We're planning on flying to Phoeix in March so I guess I'll probably be on my own to get fitted.  There, I feel better already!!! 

Would anyone like a size large "January Jewels", "Sisters in Survival", "FUBC" T-shirt?  Fire me off your address and its yours!  Would love to see one more jewel with a pic in her T.

Speaking of pics there Kathy, you still are the mystery woman!  I really enjoyed your post this morning ... its been kinda nice to let the cat out of the bag with what I'm sure alot of us have been thinking since our days of diagnosis.  Your comments as well as Kimberly's express such positive feelings and that is how I "try" to live my daily life.  To be reminded of living life day to day are great, THANKS! 

Kimberly, so by the twenties they get it huh?  My step daughter who is 21 has seemed to always have gotten it, and our 18 year old is kinda/sorta starting to get it, but my 15 almost 16 yr son is clueless!

Life for him is definitely "about him".  I at times have to kindly remind him that mom just might be a little tired, and not up to par (golfer talk there).  At his skate meet last weekend, many of the fellow parents would ask how I was doing, Zach my ds actually said, gee mom, I always forget that your having chemo.  The joys of still having some hair!

D1, so whats up with the simulation??!!  I'm not sure if I like that word or not when it comes to rads on a missing boob!!  So are we going with permanent tatoos? 

Wow, I can't believe that its already spring break time, seems like we we're just wishing each other a merry x-mas.  I think we are actually bailing out of spring break time with our kids, heading south for a little sunshine ourselves.  The advantage of split households I guess.  Hey hope that arm gets a little more limber in the next few weeks.  My pt started me on some lite weights, 2,3,4,and the killer 5 pounder.  I do pretty good if I keep my arms close to my body, but if I move with my arms away from the bod its kinda a killer.  I'm lucky/or unlucky that I still have chemo until June so by then I should be able to move into a pretzel position.  Maybe that will be good for that simulation thing too!!!!

sheshe, I cannot comment to much on your new regimen, but I do know that I take a Zofran every morning for 14 days straight while I take oral cytoxan.  I have had NO nausea.  I don't really know if its the drug or not, but I'm taking no chances.  On another note, my recently pregnant friend is having a heck of a time with morning sickness, and her ob/gyn prescribed Zofran to her and she said it is working really well.  Typically it takes almost an hour for it to kick in for her.  Food for thought!

Julie, yeah 50 degrees and your feeling like a new woman!  It must have been great to see your co-workers, I know in the beginning you really didn't want to stop working.  Glad you we're able to get out and enjoy some time out of the house.  Good luck to your ds tomorrow, that outing sounds like it may poop you out a bit.  I think I'm still recovering from last weekend of my ds skate meet and the early morning get ups on the weekend.

Therese, Deb and Paula, hoping that your txt day we're all uneventful and your "F"SE's stay well away.

Getting ready to actually go out to dinner tonight, joining friends at a new Japanese rest on Bainbridge Island.  Should be fun, although there will be no "totty's" for me, this no alcohol thing is starting to be a bummer.  I went snooping last night on the drug "methotraxate" hoping that something would say a "little" alcohol is okay.  Couldn't find a darn thing that I wanted to read.  So, somebody have a drink on me tonight, I'll have to catch up in June!

Have a great evening,  Carol

Good morning Jewels

        Took me close to 2 hours to get home last night. we had a little bit of snow about 4 inches and the traffic was a mess. Thank god i have a SUV and i feel really safe driving it in the snow.

     Just a few questions that are making me think....hummmm

anyone not get a period? Mine seems to be late....

My finger tips look like i been in the tub for week..wrinkly anyone else? I know they are stupid questions but too know if someone else has them makes me feel some what normal..if you know what i mean..lol

      I am really worried about my treatment this friday (#3) they better give me more drugs to make me not have the reaction again. But, all i keep saying to myself is 2 more you can do this..the mental game got me this time..am doing better!!

Dana-you are in my thoughts and prayers everyday

D1-glad to see you made out ok. My arm is still sore from the AND and sometimes it feels swollen

Carol-i have to post my photo from the b ad chemo day..pictur eis cute if i remember how to do this.

Gotta go to work...I know on a saturday only till noon...waste of gas to me but its overtrime that i need right now since the week off i take it with out pay,,,

hugs......xxoo

Good morning Jewels.  This will be short as the chemo fog has descended on me.  Last night was rough-- bone aches started and some nausea which I haven't had so far.  I'm keeping fluids in, and eating little bits, and got the Sea Bands on (love them-- they work so well for me).  Having lots of trouble typing, so bear with me here.  I am really tired... more so than after the other rounds.  #3 is an a** kicker here for me I guess.  Just wanted to check in and also post that I think the Claritin might be helping some.  The bone aches are definitely not worse than the last round, and I haven't had to take anything yet today for pain. 

Dana: Sorry to hear it is liver mets.  I'm praying for you and I know you will fight this (love your post).

Carol: I really do exist.  Someday I'll find a way to post a pic-- geez, by then I'll have hair again!

Vettegal:  I haven't had a period this month yet either.  Last one was some time in January.

Catch you all later.  Gotta go rest...

HI all,

Survived my last tx yesterday!!! Even w/ the IV Kytrill ( zofran ), I still got nauseated 1/2 way thru - they gave my some ativan & I sailed right thru - my shortest tx yet. I was only there 5 hours ( which included lab,dr., & chemo ). Been pretty tired & still feeling '"blah" in between the zofran & phenergan round the clock - at least I'm able to take in solid foods, albeit bland food. I spent last week, my feel-good week, getting caught up on things around here & also tried to get ahead for my 'bad' week coming up.

Although I've never had any neulasta/neopegen shots, I've still had the the muscle spasms/flu-like achiness, & even arthritis-like joint pain in my hands & shoulders. My onc says those se's are from the Taxotere. They've allowed me to take Alleve in the past, & he also says I can take Vicodin if I need it.

My nails are fine so far - bought some tea tree oil but am not very consistent in using it...hope I don't pay the price later on. I, too, have some hair that is growing & some that is continuing to fall out - including my eyebrows & eyelashes, which are pretty thin at this point ( I hope they don't come back white & curly ).

Aunt Flo came to see me on Christmas Eve, stayed 3 weeks, then haven't seen her since - don't miss her in the least. Have had a lot of hot flashes & night sweats, though. They're not bad or debilitating, just not very conducive to a good night's sleep.

The night before my last tx, Thurs. nite, I took my dd (11yo) & one of her friends to the Jonas Brothers concert ( a young teen pop group ). They had a blast, & so did I - it was so priceless for me to see them have such a good time jumping up & down screaming & dancing. I am so grateful I was at the peak of my 'feel-good' week & was able to take her - plus I know the opportunities for me to be a part of her social life are going to become less & less in the near future. It will definitely be a cherished memory for me.

Don't have much energy for specific shout-outs - just know my thoughts & prayers are w/ each & everyone of you daily.

Therese

Morning Jewels,

The sun is shining again...whoohoo!!!!

Well, as you can see, I didn't get back to see you all last night. Big day...did laundry, then took my son to lunch, and joined my staff for a meeting that lasted 2 hours regarding our direction for next year. We've grown so much. Our school was built for 850 students or so, we now have over 1000. Next year we anticipate 1100. We have added 6 portables, and may have to add two more...which means we've got no space to add another building even if needed. Our classes will all be packed to 34 and PE will be as high as 45 to 50...that's too many in one class. AHHH!!!! It was so good to see everyone though.

Sheshe- Can't tap...no problem...I just love to dance...so we can just let the music guide us!!!! Bummer about the Look Good Feel Good class... that gal didn't seem to care if you felt good about driving an hour for nothing... maybe, she was having a bad day herself...not that having a bad day makes it right to not notify participants of a class cancellation. I decided to do the Adriamycin when asked if I wanted to do TC or TAC. My onc stated I have a strong heart, and they'd be watching it carefully. He stated, and I agree, " Kimberly, you're a go getter, and I don't want you to be saying down the line if the cancer should recur, I should have done the Adriamycin." With Stage 3, he wanted to be real aggressive. I will ask for a MUGA scan after this is over to see if all is still as healthy as it was before, however.

Julie- WhooHoo on feeling good. The sun being out was a huge bonus!!!! Wishing your son good luck in his Tae Kwon Do tourney.  Martial arts is such a great thing for kids...really helps them find their center and focus. Didn't make it shopping yesterday. I'll do that next week.

Dana- Hey, Little Warrior, I with you on being able to beat down a little ole 1cm tumor in the liver and any other escapee cells no problem. Wow, who's reimbursing your premiums from Dec 07- May 09? That's so great. Then after May, you'll pay the premiums?  That is a blessing since you'll be done with school by then and have a job. My money is on you, Cute Dana. Keep up that positive outlook...it does pay off.

Carol- What a bummer in your mailbox! So, could your surgeon or oncologist write a letter to your insurance company stating that the sleeve is needed to prevent lymphodema considering the number of nodes removed? I'm with you on fighting this one. Remind them the money saved by preventing rather than reacting after the clots and swelling appear. Hope you had a great meal out...I love Sushi! Wish I could have had a drink for you last night...tried a sip of the dh's wine...BLAH...the end of next week, right before chemo I'll be able to taste wine again. WhooHoo.

Vettegal- I had a real light period the week of my last chemo (Feb), so I'm hoping I won't have one this month. No wrinkly fingers. Have a good day...bummer you have to work on a Sat. but like you said the overtime pay will be nice. Oh, and eyebrows and lashes are thinning for sure.

Kathy- Number three seems to be the @*s kicker for lots of us...sure kicked my butt. Take care of yourself...hope the fog doesn't get too thick.

Wvgirl- I'm so glad the dh is starting to come around...little by little. And you know what...reading to him if he won't read the book himself might help you connect more as a couple. Let him know that other men have been where he is and that hearing this might be helpful to you both.

That's great that you're so involved with the Relay For Life. I did that for a few years when it was done at our school right after one of our teachers passed away of lung cancer in her early 40's. It outgrew our space and moved somewhere else. Breast cancer at 15? Wow...that's something you don't hear every day. Makes you hope that every teenage girl knows how important it is to do self exams.

Therese- Last one!!!!!! Congratulations. I'm so glad you were able to take your dd and friends to a concert and really enjoy it with them. She'll remember that.

Interesting about the Taxotere causing ‘muscle spasms/flu-like achiness, & even arthritis-like joint pain in my hands & shoulders'. So between that and the NastyLasta, no wonder some of our gals are really having a hard time. Take care as you head into the fog.

I'll see ya later gals,

SIS Kimberly 

OK, I just got off the phone with my twin sis, and we crack up a lot when we're together in person or on the phone.  Anyway, we got on the topic of exercise, and I told her that after the Billy Joel concert, I felt like I'd gotten a huge workout as my chest and arm muscles were so sore.  She just started laughing.  I said, I'm telling you, I could create a new workout for mastectomy patients...the Clap Workout...watch some great music video and dance seated or standing if you're at the intermediate level, and then clap with enthusiasm when the song is over.  We are both just cracking up, and she says, hey, laughing works the abs...so we think the Clap and Laugh Workout is even better.  The visual of a bunch of gals dancing around, clapping, and laughing is just making us laugh harder. Then she says, add jumping up and down because people always jump up and down when the concert is really great...now it's the Clap, Laugh, and Jump Workout.  I said, "Oh, that's an Advanced workout, Kath."  I tell you I was laughing so hard tears were streaming and my gut was just burning as I struggled to get a breath.  She says, " It would be a big seller, Kimmy", and I responded, " Heck yeah, who could resist a laughing bald lady wearing a FUBC t-shirt on the cover?"  Maybe you had to be there to appreciated the funny quotient, but I just wanted to share.

SIS Kimberly 

Hello Jewels,

Should be motivating to do some yard work, but instead here I am, checking on my fellow sisters and downloading from I-tunes.  The yard will be there tomorrow, and its supposed to be a little warmer as well. 

Looks like once again we have the circle of those in a chemo fog and those that it has once again lifted for.  Boy this is one big rollercoaster ride!

Vettegal, hope that your trip to work this morning wasn't the 2hr commute you had last evening.  That would not be a good time for the dreaded "D" to hit if you know what I mean.  I swear that my gi tract knows that I'm close to home because I have definitely had a close call or two.   Looking forward to seeing another pic if your able!

Kathy, hopefully you get some quality down time this weekend.  Thats probably a catch 22 with two young ones though.  Hope your fog lifts soon and your se's stay as low key as can be expected.

wvgirl, kudos to your dh, thats the best news we've heard for a while.  Baby steps are better than no steps at all.  Enjoy your dinner tonight, I've as well walked in quite a few Relay for Life events.  I got pretty involved when my mom died as well from melanoma in 2000.  My dh (boyfriend at the time) and I quite often took the 3 or 4am time to walk, amazing how that spot always seemed to be open!  I'm planning on walking in the 60 miles 3 day event next year here in Seattle.  I would love to do it this year (Sept) but I think it would be too much as my rads probably won't be competed until almost Aug.  I plan on going over to see the closing ceremonies and cheer a couple of gals I know from work who will be walking.  Their team name is the "Half Racks", I'd fit right in!!!!

Oh, also I was glad to see that your BRCA test was negative.  Good for you to have had that done!   I figure its best to use all avenues of modern meds and that is definitely one of them.

Therese, how fun to go to a concert with your dd.  I like that age, the kids don't seem to be into this "I'm to cool" to go and act crazy.  As you said, a cherished memory for you and I'm sure for your dd as well.

Kimberly, so once again with your way with words I was literally picturing you doing your new exercise routine, and yes cracking up out loud once again.  My dh often has to ask me whats so funny, and at times I'm at work (sneaking a peak) and reading and laughing out loud.  My boss one time asked what was so funny, I told him just  something the crazy ladies I chat with on-line wrote.  He' so cool, as we are actually only supposed to use the shop puter for gov. e-mail, training etc., but I usually have to get my fix of the Jewels atleast once while at work.

Sounds like your district is growing big time.  You know you keep telling us about your sunny days and more are going to be moving that direction!  My son has spent most of his school days in portables, his elem/jh/ and hs have all been under remodeling during his years in each.  They will probably be about done when he graduates in two years. 

Dana, glad your finally able to have the opportunity to wear your FUBC shirt on Tuesday.  You will be very well prepared with all the info from our fellow Jewels.

Paula, thanks for the info on the simulation thing for rads.  Sounds like a bit of a process during those initial visits. 

D1, stupid pill huh?  I think that I'm slipped one on a daily basis.  I'm with you on the kick back tivo thing and I don't even have an excuse this week for being lazy.  Slept in until 9:00 this morning and havn't done much since.  That would be my version of playing the cancer card and not feeling guilty about it.

I'll be "lurking" throughout the evening, the dd and fil are coming over for dinner and to watch some college b-ball soon.

For those of you lurking as well, hope your se's throughout the day are mild, and your all feeling better soon,

Carol

Paula -- congratulations on finishing the AC portion of your treatment.  

Dana -- keep up your positive spirit and best of luck with chemo next week.  I'm up on Tuesday, as well.

Sheshe -- I'm sorry the nurse cancelled your Look Good, Feel Better session.  I live in a pretty populated area, so you might not have the same option, but I could have gone to several different locations.  You might call the American Cancer Society and see if there is one you could attend elsewhere.

Therese -- glad you enjoyed watching your daughter at the concert.  I took my boys to many concerts with childrens artists when they were young and was glad when my youngest started going to concerts that were more my taste.  That lasted a few years before our tastes diverged again.  The last concert I took him to before he got his drivers license was one that I could barely stand!

Carol -- my oldest is studying horticulture in college and came by today to drop off a bonsai he made for me.  My husband roped him into coming over tomorrow to help prune boysenberry plants, so I can leave the yard work to the two of them.  Were you able to golf this week?  My youngest is on the golf team in HS and is out on the course and/or driving range almost every day.  He and my dad are going to a golf show tomorrow.   My father is who started him on golf many years ago and loves to brag to his friends about how good he has become.  My dad still golfs several days a week even at almost 75.

Kimberly -- loved your idea for a workout.  I think that's why I like Jazzercise so much.  Moving to music makes the exercise seem like fun instead of work.  

Hope those in fogs come out soon and that the SEs remain minimal.

Hello Cathy, on the 3 day behalf, I am under the impression that your supposed to stay in the "camp".  I'd have to say I'm with you on the nice hotel front, but I think for this outing I'm game to sleep on a air mattress on the ground.  The one gal at work walked at San Diego last year, she showed me alot of pics, looked like a great venue, walking along the ocean, gotta like it.

Planning on golfing tomorrow, my dh is going to hit 18 holes and I'm going to join them for the back nine.  I was thrilled that my new "hoot" stayed in place with every swing on our last outing.  Hey I love it my two favorite things to do gardening and golf, can't seem to get our kids interested in either... dh says time to eat, hope your having a good evening. 

Oh, trying really hard to enjoy a glass of non-alcoholic wine, the dh came home with a couple of bottles, the merlot tasted like a watered down grape/prune juice, hoping that the chardonay is a little better.

Carol

So the dh decided to take a pic of me in my favorite position, stretched out in the recliner, one of our wiener dogs on my lap and of course a puter so I can check in with my sister friends...

gotta love the dh who is making dinner, and taking pictures, while I'm relaxing!  Life is really good!

Carol

Hi Jewels!  I'm actually feeling somewhat better today, though still kinda foggy.  The bone aches are improving (the Claritin definitely helped this time-- thanks girls for that tip!).  My knees hurt a little today still, but sooo much better and faster.  I'm still going to take it easy, but my mom is here until dinnertime to help.

I've read everyone's posts, but as it always seems there's so many to catch up on.  Just know I'm thinking of all of you even if I don't mention you this time!

Carol: Hope you like Wendi's book.  It's one of my favs.  Her memorial is scheduled for Wednesday.  I have to find a way to go (dh works late Wednesdays and I can't take the rugrats to that!).

WVGirl:  how nice the DH is being a dh for once.  Glad to hear it.  Hooray!

TexRN:  Congrats on finishing chemo!  Can't wait to be in your shoes soon.  Are you completely done now or do you have rads. or surgery to complete next?  Sounds like the time with dd was special. Gotta cherish those moments for sure!

D1:  Hey fellow foggy girl!  Hope you start to perk up soon.  My lows seems really low, but thankfully short (so far).  I should be pretty good by tomorrow I hope.  At least over the worse aches and some of the fog.

Sista2: I pay $30 copays every time I see my onc, which is the day before each chemo round.  I do not have to pay a copay for the labs done, or chemo, or the neulasta shot (so far).  But those $30 copays add up!  For 2008, dh took out a health flexible spending account for $2000.  This has been a huge help.  It's $ taken out pre-tax from his paycheck.  We submit a receipt for anything insurance doesn't cover (like copays) and the HFSA sends us a reimbursement check.  It's our money, but at least taken out before taxes!  We also use it for vision and dental care that's not covered.  And they covered my second wig since ins. only pays for one.  We do the same type of account for childcare.  It's been a huge help.

KathyL - i did a FSA also this year and it is a blessing.  kind of like a forced savings account.  i did $2600 this year and i'm wishing i had taken it to the limit.  it's something good our govt has done for us for sure.  i did the childcare one years ago but thankfully don't need that anymore.  i don't know if it's for all FSA's but mine has come out with a visa card that you can use to get prescriptions filled.  you just use it as a credit card at the pharmacy and it comes right out of your account with no paperwork involved.  very convenient.  i'm hoping they will increase it's usage in the future to include doctor/dental appointments, then your copay could come right out of the acct, again without paperwork.  i hope your fog lifts and pain ends soon.  take care!  (i'll be doing #4 thurs, last of AC if you want to add me to next week's list.)

Hi all,

Just a note about the FSA's - I have been using this for many years.  I am pretty sure I didn't put enough in for this year, though (drat!)  Don't forget, if you have an FSA, you can submit mileage for medical purposes also. I forget how many cents per mile, but for those of us going to the doctor  practically every week, and especially for those daily rads, the mileage can add up in a hurry!!

Wednesday is my tx day, and I am feeling really good lately.  I'm enjoying it while it lasts!!  I've been eating like there's no tomorrow, so hopefully the 3 pounds I've put on in the past week will come off next week.  That's how it seems to be working for me.

And the sun is shining, and it's supposed to be 60 degrees in Maryland tomorrow!  Come on, spring!!

Have a good week, everyone, and if it's your tx week, go kick some BC butt!!

CHJ 

Good morning, JJs

Just emerging from the chemo fog. It hit me a bit earlier this time--rolled in last night shortly after my last post. My whole body is sore today (had that after round 3 also). Slept for 12 hours, but was awake every few hours to drink H2O and relieve the Sahara mouth. dh bailed out and went to the guest BR... guess I was tossing too much. I'm having more nausea this round, too. Have taken several doses of phenergan--it's working well, thank God! Judging by how I feel right now, I'm going to be enjoying this beautiful sunny day from the recliner. It is supposed to be really nice here the next few days (we're SO ready for that, right CHJ?!). I should recover by tomorrow and be able to soak up some sunshine.

Sista- sounds like your insurance is taking an unnecessary hit on office visits. Hope you can get that corrected easily.

Carol- nice pic--that position looks so familiar--take away the dog and add a big fat yellow tabby and that's me!

Insurance companies just don't get it on prevention... it makes no sense! Our insurance has been pretty good thru dh's cancer and tx. They denied one $4,500 PET scan (called it experimental). We lost that battle after 3 appeals, and would have gone to litigation had the hospital not decided to write it off for us. (They've received the bulk of the $300,000 for dh's tx so far... maybe that made them generous?).

I just got a bill for my port that I'm going to be calling on tomorrow. They paid $210 and left me with $390 to pay...

I miss our FSA. We lost that when dh became disabled (my employer doesn't offer one). For the past 2 years we have accumulated around $5,000 per year out of pocket expenses... I shudder to think what it will be this year with mine added on.

KathyL- thanks again for this week's list! I'm praying that everything will work out for you to attend the memorial service for Wendi.

Sista- are you up for tx on Thursday this week?

Theresa- I'm a bit nervous about Taxol, too, but forewarned is forearmed, right? We're prepared!

WVGirl- glad you had a nice dinner. Add me to the Relay participants-- dh lost both his parents to cancer in the 90s. We've been involved since then.

I've also been active in breast cancer fundraising for ACS. I have done several teaching sessions on BSE. Used to sell Longaberger baskets (Ohio-based business) and they have an annual breast cancer basket w/ proceeds to ACS. That's how I first got involved.

I'm looking forward to the Komen walk this year... ours is early (May 3), hope I feel like walking.

My students have really taken up the breast cancer cause. They're wearing pink ribbons and plan to pass them out at their leadership conference this weekend. They will be doing the Komen walk also.

Wow! I have outdone myself for a foggy day... my Darjeeling and toast must've given me an energy boost!

I need all your good vibes this week. I will be staying after school to prepare my students for their competitions. I leave on Thursday and will be working long hours thru the weekend.

Okay, time to take my chatty fingers to the recliner

Paula