Jan 2008--Ain't it Great?

HA -- too funny!! Ours is the one WITHOUT all the *********'s in between. Apparently the other one is for people born in January -- interesting.

I just changed the name of our group to "January Jewels -- Sisters in Survival" so now no one should have trouble finding it.

Jewels!!

Having one of m y "DARK" weeks. The hormones are in overdrive right now and the stress @ work is adding to it and i sat at my desk yesterday morning and cried. it was only about 10 minutes one of my builders was with me and he was supporting. Vetteguy was upset that he was too far away to come give me a hug, I told him i  was a big girl and i can get thru this.

I actually slept for almost the whole night for the pass 3 nights. one night was advil pm (i had free sample) had to try it..works very well

the other night was on my own sleeping not too bad. Maybe I can see a lil releif coming around the corner...NOT!  not with the tamox....lol

Julie-invite me to the face book thjing. I have never been on fave book,,maybe

have to go snooping...

On vegas..going to give you all one warning..

it will be over 110 degrees in july. they say its a dry heat..BULLSHIT it is still frikn HOT. at night it cools aff maybe down to 100!!! The pools will be your relief but you won't be abler to stay too  long tht desert heat is brutal!!! JUST FYI.....

the double deuce is the bus that you can ride all day for 5 bucks. stops everywhere...love using it.

Carol-thanks! you made me smile and cry all in 1 minute...

Freezing rain/snow/thundersnow we had it all today!! Like mother nature was pissed off at us!!!

4 more days to Super bowl sunday. This town is rockin....

hugs,,,xxooo

Patty

go steelers!

Carol & Norma - just received a little surprise gift in the mail!! Thank you so much for the sweet, thoughtful, beautiful bracelet!! What an appropriate January Jewels memento!!

We are all so blessed to have found each other - cyberspace is a wonderful thing!!

Therese 

Thought I'd pop in tonight, been reading via my Blackberry a couple of times throughout the day.  So looks like a few of us have jumped on-board with the FB thing.  No need for panic for those that have not ... we're still here gals.  I think Kimberly mentioned it, and I would have to agree, that at some point checking into maybe FB rather than a BC site might be good for the "new norm" kinda thing.  For me, I have so relied on this site as my go to place to know and feel like I'm not some whacko that can't get over the hump of being in this new world as a BC "survivor" (I know maybe a goofy word, but what do you call us?)

Kimberly, hang in there ... you know trying to have every kid/parent on-board would be the perfect world, unfortunately you can only do your best and hope that your students (as well as parents) will respond.  In the end, you will probably have made such a bigger impact on a lot of the kids then you might ever know.  For a parent of a kid that has had "a couple issue", I would treasure a teacher like yourself.  

Therese, did we make our Get Started meeting tonight ?... looked to me from our news that Texas was still getting nailed with nasty weather.   I never did go to that particular meeting, if you went, was it more to get people enthused to sign up then anything else?

Kimberly, who'da thought we'd be excited to say whoo-hooo on being in chemically induced menopause.   You've got one month on me ... March would be my month to say adios Aunti Flo!  I've gotten some of my labs back, although I have not gone over the numbers with the onc yet, (next week) my numbers atleast for kidney/liver function looked good according to my research of the results.   Today I got my FSH which is High, although I guess if your in menopause that would be the case.   God knows I would have never thought that any of this would have been something I cared about !

I will look forward to your take on the bioidentical hormone replacement thing.   I think Oprah is having yet another show tomorrow discussing the "H" word !

D1, so as I have said to my friends, the only thong I'll be wearing is when my BGP's ride too far up you know where !  Although I do like the idea of passing along some BGP's with a bit more attitude !!!

Patty, those darn hormone (or lack there of)  induced meltdowns.   Hoping that you have a better day tomorrow, I've been crossing my fingers that I have my "moments" somewhat in check once again.    For a while there it was living so close to tears at the drop of a hat.

Pooping out tonight, as always, will be checking in occasionally via my Blackberry throughout the day tomorrow,  I love being connected to the outside world while being at work in a area that is becoming more secured via so many avenues all of the time.   As I told the dh, the extra bucks to be wired while at work is so worth it to me.

Night all, Carol

Hi Jewels, Ok I'm a page behind I just wanted to thank Carol (Golfer) for my bueatiful bracelet and the pictures of the Janurary Jewels. Thank you so much, that really cheered me up and made my day. Carol, my mom's B-Day is 02/02 and I could not think of anything to buy her, I'm going to buy her a b.c. bracelet, because her sister died from bc and I also had it. Thank you for the idea too. Have a nice day. I plan on catching up this weekend.

{{{{{{{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}} GTG back to work. Sherry

It has been an emotional roller-coaster around here the last couple of days. Yesterday I took dh to sign papers for chemo, get blood work and see the neurologist. We have a wonderful neurologist who is always straightforward and honest with us. This was our first visit to him since Ed's last tumors popped up in Nov. He encouraged us to talk w/ the onc. about dh's prognosis and how much time we could expect to gain from continuing chemo so that we could make an informed decision. It was a bit emotional for both of us... 

We had a discussion about this last summer when his cancer recurred. Even made preliminary funeral plans (for both of us). But, even though we were somewhat prepared, it was still very difficult to think about stopping. Dh took it very seriously and told me last night that he wanted to stop (as best he could anyway, given his limited communication).

At this point, lemme just say THANK YOU to Carol for letting me vent to you yesterday. I was still reeling from this change of plans when you popped up to chat on FB...

I'm not ready for him to quit--from a medical standpoint OR as his wife. I don't have any illusions that this chemo will cure him, but I believe it might arrest things for a while and hopefully help him regain his speech. IMO, it is worth continuing at least until we get the next MRI in mid-February and discuss this with our oncologist. I told him all of this before he laid down for a nap yesterday, but he was still adamant about not continuing. And I was quite upset, but ultimately I would have supported his decision. 

Thankfully, he awakened with a much more positive outlook and has agreed to give it a shot. So, we went for chemo today. We'll have another one in 2 weeks and see the oncologist to discuss his prognosis and make the decision about whether to continue. 

Got a call from hospice this afternoon (onc. made the referral yesterday). There isn't a lot that we need as far as nursing care, meds, etc. But I think we could all benefit from the grief counseling. They'll be in touch with me tomorrow to let me know what they can offer.

Sorry this is so long... it is amazing how much it helps just to share what's happening with the Jewels!

I'll be back to catch up on the posts in a bit... Paula 

Okay, time to catch up on the Jewels...

D1- hope the proof of the senior night program looked good. What a lot of work that was! Your dd's school is fortunate to have parents like you. Unless you work on one of these projects, you just don't realize how much work goes into it.

Good for you on dropping one of those remaining pesky #s! Not that you need to lose weight, though. I've seen you in person--I felt positively dumpy standing next to you (check out the pic on FB and you'll see what I mean!)

As for our LV trip, I agree that it would be better handled privately-- better to be safe. Julie's FB group will be a good place to discuss this and those who don't want to go to the FB world could be kept up-to-date through PMs here or via email, I suppose. Haven't heard any other suggestions. Any other Jewels want to weigh in on this?

I'll be home tomorrow and would be willing to investigate excursions, if anyone is interested (I know Joan and I are, at least). We were able to get a limo to the beach in CA and to Six Flags in TX for less than the cost of a tour... might be fun to look into that! 

Deb- Oh, goody! I won't be alone in rooting for the Cards (sorry, Patty!)

Carla- Glad the tooth trauma turned out to be an easy fix. It makes me laugh every time I see Vegas and virgin in the same sentence! Too bad we are on different ends of the state... would be nice to fly out together. 

Wendy- another Jewel in FBland. We're building up quite a group over there.

Weren't you on a clinical trial with Avastin? How many doses did you have? 

Julie- I enjoyed your FB pics. Your son is so handsome! And y'all have some serious snow removal equipment on the farm, don't you? Your puppies looked like they enjoyed the snow-- they are really growing!  

Patty- hope the sun was shining on your world today. Super Bowl Sunday is almost here-- hope you're able to enjoy it. ((Hug)) Dh and ds are rooting for your team, BTW! 

Therese- LOL, another perk to the new vehicle-- it fits in the garage!

Carol- I love my Blackberry, too!

Dh is awake... time to go administer some Zofran and TLC! 

Oh, Paula!  My heart breaks for you.  Continue to send prayers and good wishes your way.  I thank you for having the strength to keep us informed and up to date.  You and Ed are amazing people.  Bless you both and your families.  

Carol and Norma, what a lovely treat to come home to today.  Thank you for the bracelet!  I love it, and will treasure it.  Am thinking of adding a medical alert charm to it.  Am happy that it has an extender on it, as I wear it on my right (bc) side.  I’d like to get one for my bc friend from work, Jean.  

D1, am open to e-mails in terms of setting up our trip.  That should be an easy, effective and secure way of communicating details.  I agree, and would prefer them to be left off this thread.  FB may be a little, like Therese indicated, chaotic.

Patty, sorry to hear of your blues, too!  

For those of you doing trip research, thank you!  Honestly, I’ve been paying so much attention to the house sale and inspections (which we passed with flying colors this week and now have a sold house!), that I have done zero in terms of trip planning.  I’ve never been to LV, DH is not interested in going along, so, I am completely open to ideas and decisions of where to stay.  I’ve never gambled, but, could see playing the one-arm bandits would be fun, Deb!

Before I sign off, here tonight I’d like to acknowledge my SP and the beautiful glass-bead Christmas bracelet I received!!  I LOVE it!  Unfortunately, it’s been packed away with everything else, in an effort to “declutter” and prepare the house for showings and openings.  So, please forgive this late note of thanks.  Now that the house is sold, I’m going back and uncovering lovely treasures (and a few bills – ugh!) such as this bracelet from my SP – thank you, thank you, thank you!  ☺

Kimberly, had to LOL about the readers…I HAVE become my Mother, with multiple pairs in every accessible place…it’s really sad (and kinda funny).

Have a good evening Jewels.  Stay warm.

Tina

Jules, hmmmm, wow it does't take you long to hit the sack when the dh gets home ... you go girl !!!

On Facebook and viruses... Julie is right-- there aren't any viruses caused BY Facebook, but Kathy is correct that there are viruses connected with it (and tons of other misc. websites out in cyberspace). The Facebook related viruses usually getcha through email. In other words they "phish" out your info, send you an email with a link that looks like it comes from FB, but it actually is the virus... (there's a virus out now called "Koobface") 

To protect yourself on any social networking site (incl. this one), your personal information should be kept private (emails, address, phone #, etc). On FB, click on settings and change the security settings so that only your friends can access whatever you want to share. 

Also, look up Facebook Security and look at your Search settings. You need to control how much info people get when they search for you. I don't mind my pic and name showing, but I don't want people who search for me to be able to look at my friends list (which invades their privacy). 

I also turned off all email notifications. When I log onto FB, I always get the notifications I would have gotten via email anyway, and I didn't like all the extra email clutter. That way, I don't have to worry about clicking on an email link that isn't really from FB.

I'm sure I'm forgetting other important security details. Julie, can you add to this? And I expect LJ would be able to give us come valuable input on privacy-- in fact, I doubt that we'd catch our Jewel with the lovely hand anywhere near FB-- am I right, LJ? (I say this with the utmost respect, LJ, b/c I would truly love your advice to those of us who choose to venture into this realm)

For that matter, anyone else who is savvy, chime in please!  

Saw Oprah today. She had Susanne  Sommers on for the full hour.Even the obgyn she had on endorsed the whole idea. They never mentioned once that Susanne was a cancer survivor.Basically they said everyone should get their hormone levels checkedand if they are really low supplement them to feel better. I am sure our cancer oncs would have other opinions about this.

First, thanks to Carol + Norma for the pink ribbon bracelet. What a lovely gesture.

Paula, I haven't ever been on Facebook but mostly because it has always been "the thing" among hs/college kids. I'm more of a forum person. I think if you have updated virus software (and we ALL have that, right?...) and keep your browser set to Med-High to High privacy, you should be ok. Never provide any personal information solicited by email, period. Make sure you know whose invitations you are accepting on FB.)

For those of you experiencing lingering GI issues ... here's something to try. I too was having some issues. Just weirdness. Not like the pre-chemo days. I thought it was just lingering chemo SEs.

Well, something told me to try an experiment. I always eat pretty much the same breakfast, a high fiber cereal. Well, I found a yummy applesauce muffin recipe and started making them. I noticed that when I began alternating muffins and cereal, my GI issues seemed to get better. When I switched to having the cereal every 3rd day, it got better still. What I believe I have discovered is that my lower GI system can't handle as much fiber as it used to be able to handle. 

So if you're still having some weirdness yourself, try cutting back the fiber to about 1/2 what you're getting now. Keep it up for a couple of weeks and see if you notice any improvement. Maybe it was just me. Or maybe our newly generated digestive systems can't handle what they used to handle just fine ... just as a baby's digestive system wouldn't be able to.

One last thought ... Paula, I'm sorry at the new direction that Ed's battle has taken of late. You are both some fierce warriors and you must know that you inspire us all, every day, in that unrelenting spirit you show, of fight fight fight the beast. I remember reading that Randy Pausch's best friend, the last thing he said to Randy was that it's ok to stop fighting. And Randy passed shortly after that. I can't imagine the difficulty of reaching that moment with my own dp, and so I offer only my abiding respect and admiration, and my wishes that you are able to find your way down this new path with the same incredible spirit you have always shown. 

P.s. ... heading off to my last Herceptin.

Kathleen- interesting that they didn't mention Sommers' BC history, isn't it? I've read some disparaging comments from the oncology world on her regimen... didn't really investigate it though. You all have stimulated my curiosity. I'll have to check it out. 

LJ- congrats on being finished with your treatments! It has been a looong haul for you, hasn't it. 

Thanks for the comments on security and the insights on fiber and GI problems.

I posted some info on excursions to our group on Facebook. The rates are reasonable, IMO. The Grand Canyon tour takes in Hoover Dam as well and will take up a whole day (7am - 9pm). Cost is $179, but there's an internet special thru Feb 5 of $85 or $169 for 2 people. The Hoover Dam tour is 4 hours, with about 2 hours at the Dam. The cost of this one is $35 ($29 internet). Red Rock Canyon and Lake Mead are also nearby (much closer than Grand Canyon). 

Several sites have tours, but these were the best I found. There are group rates available if we have enough for that... just need to know who is interested in what.  

Thanks to all of you for the good vibes. It is still crazy around here. Thanks to all of the decadron, dh was awake in the middle of the night and decided at 3am that he was not only going to quit chemo, but would also stop taking all of his regular meds (incl. BP and seizure meds). I explained that these meds are not optional unless he wants to spend the rest of his life in a hospital. His seizures alone would preclude me being able to care for him at home. Thankfully, he got up this morning and took his meds, except the cholesterol pills, which aren't really an issue at this point...

Also got a call from the counselor at hospice which set him off on a mini tantrum. He was forcefully shaking his head during the whole conversation as I was learning what they have to offer. They can offer free grief counseling to the whole family and have offices near here that will be convenient for us to visit. I mentioned to dh that the kids and I could go in to their office and he indicated (with that angry head shaking again) that he didn't approve... WTF? Guess we'll have to sneak off for counseling... Can I just say WTF again?

I look a lorazepam last night and didn't even hear the phone ring this morning when they called a 2 hour delay! Scared me a little. Guess I'd better quit playing around with dh's drugs!

Catch you later, Paula 

ok Julie I have a FB now and applied to the group weeeeeeee