Jan 2008--Ain't it Great?

Hi Jewels!

I was down at Rehoboth Beach yesterday with dh.  We went outlet shopping and it was a beautiful day, though I didn't get as much as I usually do-just didn't find much that I liked.  Afterwards, went to my primary doc (GP), as I'd been awakened Thursday night with pretty intense ear pain (and I seem to have a high pain tolerance these days, so this was a little concerning).  Anyway, I have an ear infection-she put me on some abx.  I have absolutely no hearing in that ear now, and it is just ringing all the time.  At least the abx seem to have dulled the pain, so I know they are already working.  But I have no clue where it came from.  It's pretty unusual for adults to get ear infections, especially without any preceding cold or allergy sx (I've had no illnesses recently).  I'm trying not to read into it much, but I must admit I am more than a little freaked out.  To top it off, I have been exhausted for the past 24-48 hrs.-I'm hoping that's just from all the activity recently combined with the infection, but again-I'm freaked out!  So my question, ladies that are done with chemo, is how do you not obsess over things as signs of recurrence?  I was never a hypochondriac, but I feel like my body has betrayed me, and thus I can't trust that "everyday" things are not something to worry about.  I hate feeling this way, and I know if it was one of you, I'd be able to rationally answer this, but it doesn't work when I try to talk myself down.

I've read all the posts, so I know most are doing well, or hangin' in there.

Dana:  My heart just goes out to you.  I was so distressed after reading your post.  But here's my thoughts now that I've recomposed myself.  First, no change is better than things growing or new spots appearing, so have faith that the TH did do something (it held your tumors steady)-just not enough, or the effect you'd have liked.  Secondly, there are still things they can try.  I'll be curious to hear what you're doing next with the Tamoxifen, as I suspect it's our friend HER2+ that's the culprit here and really needs to be stopped.  The latest research has found that using herceptin in combo with some other drugs is very helpful for HER2+ cancers that do not respond to herceptin alone.  They've found that other drugs can effectively block HER2+ cancers' receptors (herceptin only works on one type of receptor I think, and there are multiple).  I know a woman who is doing very well with Xeloda and herceptin.  Do not give up fighting or resign yourself to defeat when there's still many options for you.  I am praying for you and know you have the spirit to keep going.  Huge (((HUG))) from me to you.

Maz:  I thought of you yesterday and hope your goodbye to Val was filled with some good memories of her.

Finally, I'd like to post a list of Jewels who are still going through chemo to keep them all foremost in our thoughts.  Many of us have finished completely, or have moved on to our next step in treatment.  I know these Jewels are feeling "left behind" at times, but you are not!  I'd like to recognize you gals now and what you are still doing:

LJ13: finishing up weekly T x12 (on #11 this week)

WVGirl: finishing AC x4 (has 2 more to go)

Deb102307: finishing AC x4 (has 1 more to go)

Golfer779 (Carol): finishing CMF x6 months (has 2 cycles more to go)

CHJ127: TC x6 (has 1 more to go)

Cathy-CA: TCH x6 (has 1 more to go)

            Peg1212: TAC x6 (has 1 more to go)

            Kris60: finishing weekly T x12 (on #2 this week)

Sheebas: AC x6 (has 1 more to go)

Wing (Wendy): finishing weekly T x12 (on #6 this week)

DanaC:  will start new tx soon

Keep on blazing those trails girls!  The rest of us are pulling you along!

January Jewels Weekly Schedule for April 28-May 2

Monday:           Sheshe and Vettegal start rads.

Tuesday:           Kris60 #2 of 12 weekly T

Wednesday:     Wing (Wendy) #6 of 12 weekly T

                        Golfer779 (Carol) starts Round #5 oral/IV

                        Maz  Last Round!!!!!  (Woohoo!)

Thursday:         LJ13 #11 of 12 weekly TH (one more to go girl!)

Friday:              unsure if DanaC will be doing something new today or if this is an open day for the Jewels.

D1, your comment about cheating death made me think of a quote I'd once heard.  I found it on Google again tonight.  It's from the movie "Hitch"  with Will Smith (loved that movie!). 

Here it is: "You must never lie, cheat, steal, or drink. But if you must lie, lie in the arms of the one you love. If you must steal, steal away from bad company. If you must cheat, cheat death. And if you must drink, drink in the moments that take your breath away."

Hey Jewels,

My last round of Taxol went very well yesterday. I sweet-talked our chef at school into making truffles to take to my chemo nurses. They were a big hit! Got a couple of pictures to share:

This one is of me with my dh, Ed, and bff, Grace. They've been with me for all my trips to the chemo lounge.

Here is a group shot with the chemo nurses.

The blonde on my right and the brunette covering the boobies on my cap were my nurses. Everyone loved my cap (thanks, Carol!).

I was awake during the night (steroids), then dozed off and woke up late for my neulasta appointment. So, speeding along to Charleston and... yep, Mr. State Trooper bags me doing 78 in a 65. I guess the bald head struck a sympathy cord-I only got a warning.

My dd went with me today and the two of us hit the mall for a couple of hours. First stop was Victoria's Secret. My baby girl, who is not quite 15, is wearing the same size bra as her mama.  

We spent the afternoon at the ballfield (ds had a wonderful day: 4/4 and 3 RBIs), then dropped by Mom's for dinner. Feeling pretty tired and the muscle soreness has already started, so I'm reclining in my PJs with the laptop.

I need to read through the posts from Thursday evening onward and I'll be back to send a few shout-outs. Hope everyone is doing well. If I fade out before I get caught up with the latest, please know that my gem sisters are always foremost in my thoughts and prayers. I love you gals!

Paula

Okay, I'm all caught up. Lots of shout-outs to give, so I'll apologize in advance for how long this one's gonna be...

Kathy- glad to read that the nipple construction went well Wednesday. Your new job sounds great. All that education is paying off for you with some great job opportunities. Good luck making a decision about your old job!

Okay, so ear infections are uncommon in adults, but I'd say that your immune system needs more than a month to completely recover and be able to fight off all the respiratory invaders in our world. I know we will adjust to our new "normal" and get on with our lives, but I'm not there yet. I believe we're all entitled to a little "healthy" paranoia right now, don't you?

WVGirl- hope your AC went well yesterday and that the se's are manageable this weekend. I'm glad you've enjoyed a break from the DH these past few days!

Tina- almost wet myself laughing at your eyelash story. I never learned how to use one of those things successfully-didn't realize they could be so hazardous! I'm still applying mascara, but the lashes are pretty thin with lots of gaps.

Carol- Congrats on taking the plunge for the 3-Day Walk. I'm excited for you! Checked out your page-love the picture of you and your boobie! LOL Take good care of those tootsies-the last thing you need is blisters. I'll have to check out the socks that Ginny recommended.

Oh, and I'm sorry to read about your co-worker having a recurrence of lung cancer.

Therese- Hope your family is on the mend from the latest injuries and infections. Good thing they have a nurse in the house, eh?! You sound great, BTW!

Kimberly, my SIS- I'm thinking of you as the fog permeates your world for the LAST time. The foglight is on high beam for you. Rest well and reenergize! Oh, and yippee on the infection finally resolving for good.

Julie- begone migraine! I'm so glad that blasted headache is gone and you were able to get out and enjoy the spring sunshine this weekend.

PALady- you look like you have a fair complexion, so I'm glad to hear you're not having skin issues w/ rads. What are you using on your skin?

I see my rads doc next week to start planning my treatments. I'll be starting in less than 2 weeks so I can be finished in time for a trip to Texas in mid-June with my students.

Joan- looks like I'll be starting rads soon after you-hopefully by May 9. I will be having 25 whole breast rads, with 8 boosts to the tumor bed built into those 25 somehow (I think this is a fairly new treatment approach).

Dana- oh, honey! I am so very sorry about your bad news.LJ's suggestion is a good one: explore those clinical trials. I'd be looking for a second opinion if your doctor does not have a new game plan to fight this thing. You are our LW, keep fighting and KEEP THE FAITH, Dana!

D1- don't sell yourself short-you ARE a good parent! But I do know what you mean-I'm just glad my kids are resilient enough to be okay in spite of my parenting fumbles. Hope dd's ankle is mending well.

Sheshe- hope the muscle strain is better and you're able to get around and do the things you need to do. So, when do you start rads?

I'm missing some of our Jewels. Hope you gals are doing okay: Jenn- are you feeling okay?

CarolC- how's the job hunting going?

Judy (Sheebas)- I know you stopped AC and were starting something else (Xeloda?). How's that going?

Deb1023- you had Taxol #3 this past week, right? How are you doing with the se's on the 3 week schedule? Just one more to go...

Okay, my body is aching for the bed. Night, all!

Paula

Morning Jewels

The weekends go by too quickly, I'll be meeting the dh and friends on the back nine of golf this morning ... I stayed home first thing, needed my "puter" time fix!!!

Kathy, Thinking that time will heal some of our thoughts that I'm sure we've all had each time there is a ache/pain/cough that in the past we wouldn't have thought twice about.  Your responding to your antibiotics it sounds like, hope your up to snuff real soon.

Thanks for "updating" the update list for txts.  Wow, it was pretty awesome to see just how small it has gotten, looks like a few more will be wiped off here real soon.  So hopefully come June I won't be posting to myself!!! 

I also loved the quote ... thanks for sharing!

Kimberly, alrighteeee now, sounds like the infection is finally losing it battle, that was a stubborn one ... hope your "mounds" have softened up a bit!

D1, I like the words you shared with Kathy, how can each of us not have "those" thoughts atleast once?  I'm sure that it will just be a matter of how we deal with them.

Looking forward to the dd game report, although being a "pita" driving to the game yesterday, it was probably good for her to have one more day.

Julie,  yeah on stomping out that migrane a bit quicker this go around.  Hope you enjoyed your quiet night, and that you we're able to concentrate on your work thats been on the back of your mind.

We chaperoned a prom about 5 years ago now, was pretty fun to just watch the kids having fun! 

Jennifer, so is everything okay on your end?  Pop in if you can just to let us know, I don't think I have missed a current post.

Maz, my thoughts have been with you gal, I'm sure you've been on an emotional rollercoaster over the past weeks.  Try to take care of yourself as you move forward.

Paula, too cool of pics, you look like they make you pretty cozy for your txts.   Its great that your dh and gf have been able to be with you throughout each round.  (Cool hat btw!!)  I've kinda shared the experience with a few, I figure if friends call about giving me a ride they might actually want to see what goes on.  My dh has a commute of almost 2 hours each way to work so its worked out well for him if I have rides.  My ds will be escorting me on Weds., he's a braver kid than I would have been.  I still don't like the whole process, thank god for Lorazepam!!!

Glad the baltitude may have helped with the speeding issue, as you might remember, I wasn't so lucky while sporting some hair.

Sounds like a fun weekend with the dd as well as the ds.  Its great to hear the feel good stories of our families!

Joan, although I work most often, I do like to tune into GMA when I can.  I think Robin would look gorgeous even if she didn't have on tv makeup.  I love her personality as well.

Dana, if your able, a second opinion as Paula suggested would be high on my list for a plan of attack.   You should be able to look under the hormone category at this website, there are numerous topics related to taking Tamo.  Keep up the good fight gal.

wvgirl, you sound like you have had a stress free couple of days, are you able to ship the DH away again soon! 

SheShe and Vettegal, off to the sun tan booth tomorrow it looks like.  Keep us filled in on your progress if you don't mind.

Speaking of rads, have you all had your "simulation" done while you we're still undergoing the chemo, I'm thinking I need to be getting an appt, even though I have a couple of months. 

Well, off to shower and hitting the links.  I'll be checking in this evening, good day to all,

Carol

Hi Jewels,

Carol - I had my rad sim done 3 weeks after chemo ended. That's what my oncs (medical and rads) said. Maybe yours will recommend something different.

Joan

D1, Paula, and Carol:  Thanks for your words of wisdom.  It's reassuring to know I'm not crazy for those thoughts.  I know I will get less worked up over things over time.  This dang ear infection is the pits!  I knew I could count on the Jewels to help me put it all in perspective.

SIS Kimberly:  I forgot to say a big woohoo about the infection clearing for you!  My, we do grow some nasty bacteria in this bunch, huh?

Julie:  Soooo glad the migraine is gone.  I hope it's the last for you for a very long time.  And, I ditto the hair comment about Lynette on DH-WTF!  Do they have to portray BC patients that way???  Gawd, I seriously hope I don't look like that as my hair grows in.

Paula:  Loved the pics! 

Dana:  Keep us posted.  Also, let me know when you'll be starting your next type of tx so I can put you on the weekly schedule.  Keep that fightin' spirit going.

Ms. Sherry - thanks for the scriptures they really do help and Lord knows I need them.  You are truly a doll!  God bless ya!

Dana 

Happy Sunday evening, Gems! Pretty quiet today on the thread - hope that means everyone was off doing something they enjoy! The weather didn't cooperate here much today and it was cloudy and cold all day - I was hoping to sit out and soak up some sunshine, but no dice! I did make it to Wally World for the first time in about two weeks, so that was quite an adventure!! I was about half way through my list and ready to find one of those motorized cart thingy's - wasn't sure I would make it! I did, though, and boy was I pooped when I got home.

Paula - love the pics! Thanks for sharing. Looks like you had quite a crew of nurses at your center! Congrats to the ds for a great game! Glad you got some shopping time in with dd. Hope your muscle pain isn't too bad tonight - are you staying home tomorrow???

Carol - hope you had a nice day on the course and aren't too tired tonight. So sorry to hear about your co-worker - give him a big {{{{HUG}}}} from me too. I'll add him to my prayer list.

SheShe - glad you got to the gym. Working out has definitely not been one of the things I could do during my chemo, but I fully intend to start once I have more energy! I'll get there one day!

Kathy - hope your ear is feeling better!!

To the rest of our Jewels - thinking of you! Check in with us when the fog lifts!

I am one of the few here not doing rads after chemo - I had clear margins and no lymph involvement, so they say rads weren't necessary. I feel kind of in limbo right now b/c I don't see my onc again for 3 weeks. I asked him if there were any scans or tests, etc. that we will do and he kind of blew me off about it - anyone else get that feeling?? I want to KNOW that I'm cancer-free now that I'm done with all the chemo! I plan on "pressing" the issue the next time I see him and also plan to take my dh along b/c he can press a little more for me!

Sooo, my next step is reconstruction - I had bilateral mast. I will meet with my plastic surgeon on Friday - kind of anxious about that. I want to get the process started as soon as possible so I know I'll be done before the school year starts up again in August! I know some of you have been doing reconstruction as you also did chemo - is there anyone else going to start the process now that chemo is over?? Just wondering if I'm out there on my own on this one.

Well, off to check my DVR'd shows - hope everyone has a good Monday! SheShe and Vettegal - I'll be thinking about you as you start your rads!!

{{{{HUGS}}}}} to all!

Julie

Good morning Gems,

I'm feeling pretty good this morning, so I'm off to work today. Had a painful Sunday, but slept thru most of the day. Just popped in to wish our two rads gals good luck: Patty and Sherry, hope your rad tx goes well!

I also wanted to let you know that I'm almost finished with Wendi's book "Hanging out with Labcoats." I'll be happy to send it on to the next Jewel who wishes to read it. It is very well-written and loaded with pearls of info--I've got a list of books and websites to check out. Wendi's BC was triple negative, so I'm very interested in her experiences.

Carol- you were right--it is an emotional read. I've shed a few tears and said many prayers for Wendi's family while I've been reading.

Kathy- thank you for telling us about Wendi. She is a SHERO!

I'll catch you gals later...

Paula

Dear Jewels-

Thanks for all the words of support. I made it through the wake, funeral service, and the cemetery.

A lot of people came--family and friends. I was surrounded by people who loved Val and I found great comfort in that. I got lots of love and hugs from our friends. Some friends I hadn't seen in many years. People that hadn't spoken in years sat down together. Rifts were healed. Val brought us together.



As hard as the last few days have been, the really hard part will be going on without her.

I will carry her in my heart as long as I live. And I thank you Jewels for being there & helping me through this.



I'm facing my last chemo this Wed. With a little anxiety and trepidation. FUBC!



Maz

Good Morning Jewels,

April 28, 2008

Morning has gently painted only two boards of the fence right next to the adolescent, ornamental strawberry tree outside my office window.  The sun's light is diffused as if it has not yet awakened.  The rest of the fence and my little tree are patient in the shadow listening to the symphony of songbirds while awaiting the gift they know will come.  I am that little adolescent this morning stuck between the shadow and the light wondering what is next.

Indeed, what is next?  The shadow reminds me there are still cold nights ahead as recovering from the beating my body has taken will be slow, but the sunshine begs me to look towards morning as each day brings me closer to my new 100%.

The question was raised in my online support group, "How does one move forward from something like this without feeling paranoid about every ache, pain, or new sensation considering our bodies have betrayed us once already?"  That is a good question.

As humans, we do not like having our mortality thrust in our faces.  We want to believe that we are all going to live long and wonderful lives, so when something rises up and challenges you, "You wanna bet?", it tends to shake you right to the core.  Often that shaking up does not happen right away.  Being in survival mode tends to put one on a path with blinders on moving one step at a time and keeping to the plan that will get you to the buried treasure…back to your life.  When the treasure is found, you are left to wonder, "Now what do I do?", because you know that you can never go back to the life that you were leading before.  The journey has changed you, and change is not always easy.  It takes readjustment, and that takes time and patience.

I do not agree with, but do understand, the statement, " our bodies have betrayed us". My body did not betray me.  My body did what it knew how to do.  However, it did not know how to deal with years of being fed what we had been told until recently was 'good food' filled with hormones, antibiotics, pesticides, additives, preservatives, artificial colorings and flavorings, and high fructose corn syrup.  My body processed everything to the best of its ability, but eventually had no choice but to send out the S.O.S. to let me know I had to do something NOW!!!!!  Thank you body of mine for loving me enough to fight for me.

Will I wonder if cancer is back with every new ache, pain, or unfamiliar sensation?  I don't know. Right now, I am in awe of my body and of its resilience.  I trust that if I give it what it needs, my body will do what it knows how to do.

I know that nerves, which are trying to reach out and reconnect, will not be comfortable and could take many months to regenerate. I know that the numbness in my shoulder blades and running from my armpits down to my elbows will eventually go away, and that the feeling as it does will not be pleasant.  I know that the range of motion in both arms and shoulders will take time to return and that the tight and tender tendons and muscles, which have been traumatized, will once again be flexible. I know that as I build up my currently non-existent muscles that they will ache more than before, as it will take them longer to re-establish themselves.  I know that my stamina will not return overnight and that my body will tell me when it is time to rest.  I know that my bones will complain as they recreate themselves from the inside out after being repeatedly assaulted. I know that I will feel more at my chest wall than I have ever felt without the cushion of breast tissue once there, yet, that feeling will remind me to listen to my heart and the wisdom of my intuition. My body has been taken down to the barest of essentials.  Like a beautiful ancient forest, destroyed by a raging fire, what remains are the makings of a new and thriving ecosystem, and I, like the forest, will be present at every moment to witness the miracles.

I don't know if I answered the questions previously posed to the satisfaction of those who have asked, but for me, I am grateful for the opportunity to think upon the questions and find in them my own answer. I will listen to my body. If my body says, "This isn't right", I will act.

I know I have said this before, and I know that mere words are incapable of expressing the gratitude I feel for each one of you.  I have been truly blessed to witness humanity at its best.  The outpouring of love and support (and magic chicken soup) from friends, family, coworkers, and the friends and coworkers of my friends and my family, of neighbors and acquaintances, and even of total strangers has been a lesson in the power of community. Speaking of the power of community, my online support, my Jewels and my Angel Watchers, have provided me with an unconditional let it all hang out forum. Without them, getting through this without a total melt down would not have been possible. To find these two groups, out of all the support groups available to me, was not an accident, of that I am sure.

The fog has lifted. Thank you for standing vigil with your lanterns, flash lights, and fog horns, and for the loving encouragement to follow your voices. For those of you who did the Boogie-Man shuffle-right-on-out-of-town dance…THANK YOU!!!!  The infection seems to have retreated. I have one more antibiotic infusion today, and tomorrow I see the plastic surgeon. I hope that all looks well from his point of view. The mounds are getting softer...yippee!!!

Let the healing begin!!!!!


xoxoxo
Kimberly

PS- OK, so yesterday, I thought, I've got some energy, I think I'll sweep and mop the floor , which hadn't been done in months. Darn good thing we have the color floor tile we do. It hides a multitude of things. Even my broom and mop were saying, "Ewww...that is so gross!".
Ummm, how did I ever clean the entire house in one morning?  I personally vote for the following new motto, " Your house doesn't have to be perfect. Do one chore, or not, and call it good for a day."   I personally invite anyone to borrow that motto. 

Still feeling  low on the energy front (it took me several hours to compose), but should be up to full on shout outs soon.

Dana- I knew my Little Warrior would shake herself off and march onward. I'm so proud of your positive attitude! 

Maz, I've been thinking of you. Glad Val was there to bring everyone back together. ValAngel will certainly be with you on Wednesday...last one!!! WhooHoo!!!! 

Kathy- I'm sorry you had a crummy morning, and so glad your dh understands. LOL on your description of yourself.

wvgirl- I just reread my post to you about the DH. Man, I can just be blunt, can't I?  I'll have to work on that.  Hope your peaceful weekend gave you time to reflect and enjoy your daughters' company.  You have so grown since we first met here.  You are coming into your powerful self, girl!!!! 

Paula- Loved the pics. Congrats on being done with chemo.  

Julie- I'm with ya on the too pooped to pop energy level.  Glad you're coming out of the fog.

OK, my eyes are heavy, and I've got to post this before I fall asleep at the computer and lose it all. 

To those heading off to the tanning booth today, don't forget your sunglasses. 

Kimberly:  Thank you for your post.  You have such a way with words (as we've said many times before).  I feel like I should not even bother to rant or open my "mouth" because you ALWAYS have the positive outlook, and I so need to work harder to acheive the same.  Regardless, thanks for your insight, and glad you're "back".

One more question is it only me but I get a burning sensation in my breast.  I thought it was the chemo doing its job - he ha.  But evidentally not!  Does anyone else get these feelings?

Dana