Jan 2008--Ain't it Great?

Hope this finds you all feeling a little better and staying warm...

I decided to change my pic, kinda dorky to be golfer and have a pic of waterskiing (my other passion).

D1 - Thinking "B9" all the way gal, sorry to hear your in for the waiting game again.  If we don't all come out of this journey without a new appreciation for patience I'd be surprised.

KathyL, just a note on the Smooth Move Tea, I got word on another posting that it has an ingredient that would be like taking two Senokots.   I had some Miralax this morning which is now over the counter, you may want to pull it up online and read about it.  I'll let you know if it works for me.  Its what my onc suggested, should not cause the gas and cramping.  I hope you had a mellow day and got some rest, its got to be a handful with young ones.

Kimberly, once again you out did yourself with your wonderful words of wisdom.  As I read your poem I would think how real the words are and how priorities really do change.  Also thought I'd share I had my version of a pomegranate martini, but instead of vodka I added some Miralax (Yummy).  Hey cool on the golfing, I sway my arms back and forth every once in while seeing how far I can raise my right arm.  Have a ways to go!!!  Where abouts is Lincoln?, guess I could look at a map, I go to Redding and golf each year with a friend (low and behold for a Breast Cancer Benefit), whooda thunk I'd be one of the stats.

Vettegal, glad to hear some spunk in your post and that your able to share some laughs with the dh.  So how is that arm of yours?  Havn't heard too much about it so hoping that your healing up.

wvgirl, what a cool brother to share in your adventure.  I'm not sure I would want to see my bro bald!

DanaC, hope all is well, your probably busy with school/work.  I placed the order for T's, didn't have a size for you, so I ordered a Large (just guessing).  I also have one extra large available.

I'm thinking of calling Nordstroms tomorrow to see about setting up an appt for a fitting for a couple bras, and a new "hoot".  I think I can almost tolerate having something touching my mast site.  Has anyone else had/wanted to do this yet?

Its getting pretty tough to chat to everyone, but I think that with this great bunch everyone is getting the support they need with their individual posts.

Okay, my hands are freezing, so time to go,

Carol

Good evening, Jewels!

So much has been going on in my life and yours that I don't know where to begin.

D1- what a roller-coaster week you have had. I'm sorry to hear about your chemo reaction and the new lump (waiting to hear B9). I have to say you look lovely in your baldness. I admire your courage and spirit!

DianeB- I can't fathom how you must feel after two drug reactions. Let's hope that CMF is the right chemotini for you. Hope you get home from the hospital on schedule!

CarolC- I'm so sorry about your financial fix. My heart goes out to you as well for the even more frustrating delay in treatment. You do NOT need this stress and I hope you don't mind that I am praying for a solution to both of your problems.

LJ13- AAARRRRGGGGGHHHHH

SIS Kimberly- beautiful poem. My fav line: gems of your journey

I believe ALL OF YOU will be the gems in my journey thru bc!

Jenn51 and KathyL- hope you are feeling better

Sherry and WVGirl- congrats (?) on joining the Baldness Bunch. I'm just a couple of weeks behind you!

I had my first chemotini yesterday- AC. The infusion center has little cubicles with lounge chairs and little tvs. I took some papers to grade and a book to read. My port access went smoothly and hardly felt anything thanks to EMLA cream. I got a dose of Decadron, another of Aloxi, and then Ativan (which they only give to the "young women" who might have anticipatory se--so I sez- young women? count me in). Didn't feel much but a little lightheadedness and my nose and sinuses felt a little stuffy, but not bad. Next time I think I'll skip the Ativan as I think it might have added to my symptoms--and I can drive myself if I don't take the Ativan. My best friend drove my hubby and me to the infusion center (dh is a 19 month survivor of glioblastoma, has seizures and can't work or drive). We had a light lunch afterwards and spent a little time in books-a-million (my fav. place to shop)

So other than a little fuzzy-headedness, I felt fine until around 8pm last night (about 30 minutes after I ate). I was actually in the middle of writing this note last night when that wave of nausea hit and I wasn't able to finish writing. I took my Phenergan and it subsided some, but I still felt pretty crummy when I went to bed. I slept good even though I was awake several times through the night.

Today I went back over for my Neulasta injection. I took my second dose of Emend this morning and haven't had any more of the nausea. Took a nice long nap this afternoon, though, which explains what I'm doing on here this late!

Sorry for such a long post. I hope all of my gems have a great Sunday.

Wow, Jewels - you gals have been chatty the last two days! I'm trying to catch up!

Kimberly - LOVE the new poem! They always make my day.

D1 - so sorry to hear about the lump - it's good you insisted on getting it looked at. I'm hoping for a BENIGN biopsy! That's great you got a physical therapy script. Hope you're still doing well after your long day - get some rest and enjoy your favorite shows.

Jenn51 - hope your shaking has calmed and you've had minimal se's. Get your rest!

Vettegal - LOVE the clippers story! I too have very thick hair and wonder how it will be shaving. I'm right there with many of you and am finding more and more strands of hair on my pillow in the morning and on my bathroom floor after blow drying my hair. It was pretty long, but I got it cut real short last week in preparation for the shaving to come soon, I'm sure. I'm planning to have a shaving party with lots of drinks to go around!

KathyL - so sorry you're feeling some se's. Get your rest and take care of yourself. I'm sure it's hard with little ones  - hang in there. Thanks for the info on calcium and fluoride - guess I need to add those to my Walgreens list!

WVgirl - that is so sweet of your brother to do that to support you - no way mine would do that!! Can't wait to see pics!! Post when you take some!

DianeB - I'm so sorry to hear you had more trouble with your treatment. I sure hope they get it right for you this time. Sending {{{{{{{BIG HUGS}}}}}}}}!!! Check back in when you can.

CarolC - I'm so sorry to hear about what you're going through. I'll be praying that your creditors will agree to a solution for you. My heart goes out to you - hang in there.

RN - glad you haven't had any bad se's so far - here's hoping  they stay away!

Carol - I'm so excited about the t-shirts!! I'll get my check in the mail to you asap! THANK YOU for doing that for us! I actually ordered some bras and new "hoots" from tlcdirect.org. I've worn them a couple times and am pleased with them. The site gives an explanation of how to measure and mine fit great.

Funny story - my son had his testing today for his next belt in Tae Kwon Do and I wore one of my bras. I've worn it a couple times out shopping just to get used to it, but my husband hadn't really seen me with it on. I had taken off my coat and got up to take some pictures while my son was doing some of his kicks. When I came back to my seat, my dh had this strange/surprised look on his face and he said, "Hunny, you have your new boobs on!" - then he actually took his hand and reached out like he was going to grab them!! I quickly gave him a look like "What the h*ll are you doing?" and he remembered where we were and that there were people all around! Then we both just started cracking up!

Well, girls - I'm going to need some good vibes/thoughts sent my way this week. First, I'm going back to work for the first time since Dec. 7 - before my surgery (I teach high school business). I'll only be there Tuesday/Wednesday of this week because I have round #2 of chemo on Thursday. I'm really getting worried about that since my chemo/flu issue put me out for the count for about two weeks! I'm running out of sick days at work and really need to get back to it full-time as soon as possible - unfortunately, we don't have a sick bank like many schools do. Anyway, I'm hoping my chemos will only cause me to miss two/three days max and I'm still going to have to borrow from next year's sick days to make it through the year.  Sooooooooo, any good vibes you can send this week will be appreciated! I'm nervous and excited to get back to work for a couple days - my strength isn't quite back to 100% yet so I just hope I can make it through the day okay!

Sorry for such a long post - you all have been "talkative" the last couple days! Stay warm Jewels!! HUGS to all!

Julie

Good Morning Jewels-



Diana, I hope you're feeling better today, and that Carol's info on CMF eases your mind if that ends up being the treatment plan. The doctors anticipated the Cytoxan reaction, but your news about the allergic reaction to Taxotere...this is your second infusion and D1 had a reaction on the second infusion as well...is a little unnerving. I'm not liking that at all!!!!



KathyL- Thanks for the info on Calcium and Flouride...I'm on that today! Sorry you're feeling so slow...listen to your body...it knows what you need. Just rest. The tea is Smooth Move, not Slow Move silly girl...although that was kind of funny, since it does feel like the digestive track is in slow motion.



D1-I'm so glad I could bring a smile to your face! So, like Kathy, I'm glad you're just going to take it easy and rest today. This is your second infusion, so how is it different than round #1 besides the reaction to Taxotere? I'm wondering if the effects are cummulative with each subsequent infusion, or if each time will result in a similar reaction as the previous one.



So those of you in the cars in front of mine on this chemotrain...what's the consensus?



With both D1 and Kathy needing to rest, a calendar of who is doing what this week will most likely not be available right away to send out the shout outs...so here's a general shout out to anyone who is starting chemo, doing their second round, waiting for test results, or their treatment plans...(((((HUGS))))) to you all.



SIS Kimberly

Good Morning Jewels-



OK, I'm such a dork. I don't know how I missed a whole page of posts...



Diana, I hope you're feeling better today, and that Carol's info on CMF eases your mind if that ends up being the treatment plan. The doctors anticipated the Cytoxan reaction, but your news about the allergic reaction to Taxotere...this is your second infusion and D1 had a reaction on the second infusion as well...is a little unnerving. I'm not liking that at all!!!!



KathyL- Thanks for the info on Calcium and Flouride...I'm on that today! Sorry you're feeling so slow...listen to your body...it knows what you need. Just rest. The tea is Smooth Move, not Slow Move silly girl...although that was kind of funny, since it does feel like the digestive track is in slow motion.

And good advice for CarolC.



D1-I'm so glad I could bring a smile to your face! So, like Kathy, I'm glad you're just going to take it easy and rest. This is your second infusion, so how is it different than round #1 besides the reaction to Taxotere? I'm wondering if the effects are cummulative with each subsequent infusion, or if each time will result in a similar reaction as the previous one.



So those of you in the cars in front of mine on this chemotrain...what's the consensus?



Carol- Thanks for the compliment on the poem...and I'm all over the constipation prevention-tini. I bought the Miralax, so I'm ready to round #2 on the 29th. Lincoln is about 20 miles north of Sacramento.



CarolC- I am so sorry that the SE's are staring to hit, but even more sorry that on top of everything, you have to worry about finances. It hardly seems fair that anyone has to even worry about money when dealing with medical crises. Kathy gave you some great advice. We'll all send out positive thoughts to the universe for a financial remedy for you.



Sista-You're sounding chipper. Good to hear.



Paula-Thanks for noticing that line as it was purposeful. Glad to hear you're doing OK as far as SE's so far.



JulieK- Positive vibes going out your way!!!! Your teacher's union should consider proposing a sick leave bank. I'm so grateful that we have one. It's saving my butt. I'm glad you can borrow from next year, but where does that leave you if you need a day next year? Is the dock amount to pay the sub too much to consider since it will only be two or three days a month?



How you doing Jenn51?



With both D1 and Kathy needing to rest, a calendar of who is doing what this week will most likely not be available right away to send out the shout outs...so here's a general shout out to anyone who is starting chemo, doing their second round, waiting for test results, or their treatment plans next week...(((((HUGS))))) to you all.



SIS Kimberly

Kimberly, as I emerge from the dark days of treatment no. 2, I have to say
that there is a bit of a cumulative effect. I definitely felt a little worse this time around, for a little longer I think. I don't know, it's not a dramatic difference. It's almost like my body didn't quite recover fully from Tx #1 when it was hit with Tx #2, so it seemed to take me down a little harder.

I'm going to really focus on enjoying the next 4 days (including today), as Tx #3 is coming up this Thursday and I want to remember feeling better before I go again. 

I love this site!  You girls just make me laugh reading all the posts!  Anyway, I probably won't be on again until tomorrow but wanted to post the schedule for the week:

Monday: Cathy-CA starts round #1

Thursday: Sheshe48 and Julie K do round #2, LJ13 does round #3

Friday: (big day for the Jewels!) round #2 for PALady and Deb102307. And round #1 for JKiss75 and Vettegal.

If anyone else has more upcoming infusion dates or surgeries, etc. let me know. 

Hello Jan Jewels,

Just to update you.....My tooth abscessed, so my chemo was postponed until this thursday, had to have it drained, swelled like the size of orange.  I will be getting a root canal Monday morning, and my hair is coming out in buckets....Tooth abscess vs Chemo its a toss up.  What a shitty last few days, ready to get back on my chemo schedule.....Oh well enough bitching and whining at least I am feeling a little better

AzDonna

HI CarolC,

I found a site that maybe can help you, I was going to look into it myself. Patient Advocate Foundation

www.patientadvocate.org    800- 532-5274  They provide help with education, legal counseling and Financilal issues. Debt crisis matters, Job discrimination for cancer patients and survivors.

Take care, Sherry

I'm so glad there's this site to relate to other bc ladies! Yes, the blood clot is due to the port. One more thing to deal with on a daily basis. I have to go in for daily framin (sp?) shots for a few days and then they will put me on blood thinning meds that will require going in for monitoring. The CMF starts thurs. and I am concerned about having the cytoxan in my stomach for 28 straight days so will talk to the onc about that.  Everyone else seems to be doing 12 infusions instead of 24. It seems this is a new way of doing it. The Seattle Cancer Care Alliance has been doing it this way for about a year, so I hope they know what they're doing. I'm kind of a skeptic these days. CarolC, I am also praying for your financial situation. No one needs that on top of everything else!

Wow. Sounds like this was a rough week for a lot of people. Lets hope this up coming week is a little kinder to all of us. 

Hope everyone has a better week this week.  I go in at noon for my first round.  I have been told to expect to stay 4-5 hours, so I'm treating this like a cross-country plane trip and taking lots of books.  My Jazzercise instructor gave me a beautiful canvas bag filled with books last week, so I've picked out several and have the bag packed with water (flavored and not), snacks, and meds.  I've told my husband he's on his own for dinner, since I want to eat very light tonight.  Even if I don't have immediate SEs, I have eaten out so much in the past few days that I need to get back into a better eating pattern.  My attitude for the past week has been if something sounded good, I'd go ahead and order it because I'm assuming I'll have months where nothing tastes good.  If I turn out to be one of the lucky ones that don't end up with metal mouth, I'll just have to work a bit harder to drop the couple extra pounds I've picked up.

I did okay on the first day of the steroids.  I'm normally an early riser, but didn't have any problem going to sleep last night.  I just woke up a bit earlier than normal, but that's probably nerves.  I only take them for three days per cycle, so am hoping that it doesn't cause too much of a problem.

I'll check in tonight to see how everyone is doing and let you know how my first day went.  By being one of the last, I have a chance to learn so much from your experiences and appreciate you sharing the good and the bad.

Good luck Cathy-Ca!! You know we're all there in spirit with you.

I called off for at least half the day today because I'm still having chills, achiness  and just feel weird. However, just my luck - I had also planned to call my bank again re. my mortgage and the Social Work office at the Cancer Center at UNMC to discuss counseling for my financial difficulties. Of course of all days to stay home - it's Martin Luther King Day and banks are closed! Sigh.

Maybe someone will be at the Cancer Center - we'll see. But at least I'm trying to develop a game plan here. Thanks for such great ideas and understanding. In the past I would never have shared something like this but I'm not going to take this treatment without excercising all my options.

I also wrote last night to Roche re. my Xeloda denial in the event that it doesn't get approved on appeal. Interestingly enough I found that they have an assistence program which includes Xeloda. So I wrote to them at

https://www.pparx.org/Intro.php. Check this site out because it explains the process that you can request assistance for any of their treatments. I imagine it's similar with other drug companies in case anyone else ends up having a similar experience.

Kathy L,thank you so much for this great idea!!

Lastly, Carol I was about to write your check and I'm so sorry I'm confused. Is it $11.74 plus $3.00 shipping or did that price include the shipping? You probably told us but I can't seem to find it.

My thoughts are with all of my sister jewels today - I am so glad we have each other!

Well I'm getting on the phone now to see who I can reach. Take gentle care of yourselves today, Jewels.

Good Morning Jewels,



SheShe-We must have posted at the same time yesterday. Glad you seem to be doing well all things considered. I agree that all the Mom's deserve a huge round of applause...especially those with little ones.



Jenn 51- Sorry to hear you're still out of it, but glad the shakes weren't due to a fever. Hang in there.

I'm almost 8 weeks out from my bilat. and I'm still experiencing discomfort. I can't sleep on my left side at all, I feel tightening under my arms, my chest feels like someone is sitting on it at times-results of expansion-, and I don't have my range of motion back yet. Give your body time to heal...it's been through a lot.



LJ13- Wow, doing your tx every two weeks certainly doesn't give your body a chance to recover. I'm every three weeks with all three of my chemo drugs, so hopefully that third week will give my body more time to recoup.



Paula-Sorry you didn't sleep well, but thankfully you had the day to rest. It must be difficult having to drive even when you feel like c@#p. Does your community had Dial A Ride? You call in advance, and they pick you up, take you to your appt. , and pick you up at whatever time you determine? I've heard the American Cancer Society can help with transportation issues. Just a thought. I can understand how your dh could feel helpless at times not being able to assist you and knowing how much you do. ((((HUGS)))) for you both.



Kathy-How could I have ever doubted that you'ld post our calendar, through the fog as D1 would say?

You are amazing. And what a wonderful story you shared about your daughter. I can't even imagine having to deal with my lack of energy and the abundance of energy kids bring into a house...I'm glad you have wonderful mom friends who are willing and able to give you a break...and let's not forgot the GREATEST DAD!!!! My hat, although I don't wear one- I look like a total doofus in a hat-, is off to you!



Vettegal- Nice picture. Glad to hear your arm is slowly getting better. Are you able to use your headset without too much discomfort yet? I know you're anxious about your first infusion, but once it's over, you'll think....that wasn't so bad...until the SE's hit...but after what you've gone through already...you might think it's a cake walk. :-)



D1/OLE- Speaking of cake....chocolate cake? Wow, that's an interesting thing to crave. I ate lots of eggs, too. It was all I could really taste. My taste buds are being choosy about what they taste and what they don't. It's an adventure. Leave it you to find the silver lining while experiencing the se's of tx2, "at least my hair won't fall out!!!!" LOL I am so glad that your college girl was able to be home with you over the holiday. I know you'll miss her. And how sweet to do the laundry and housework, and try to cook for you. I hope your PT therapist can help you learn to stretch and relax your back muscles,so you don't have to do spasms anymore. Glad the heating pad is helping relieve that tension.



AZDonna- What a bummer about the tooth...but better it happened now and not in the middle of chemo week. Hope your root canal goes well...yeah, like making a crater in your mouth and digging around in there to relieve an absess is something to look forward to eh? Thank goodness for pain meds. Take care of yourself. (((HUGS))))



DianaB-You have been through so much...I do not blame you for being skeptical about this next round of a new treatment. Will the blood thinners only be for the duration of the treatment? Here's to an easier road ahead.



Deb-Glad you're feeling normal enough to go play. Good for you. I hadn't heard of the Lydia Project...that's nice to have a chemoangel. When I left the hospital after my bilat,the head nurse from the Breast Cancer Center gave me a canvas bag with all kinds of helpful goodies to help me with recovery. It was put together by a group called "The Essentials Bag". I made a donation with my Thank You card when I got home, so they could put more bags together for other bc patients.



Has anyone heard from Dana? CathyC- Good for you!!! Way to get on top of it! PALady, that's the same schedule I'm on for my steroids.



To all of you SHEROES...those of you dealing with horrible reactions to tx, getting the flu or some other lovely illness on top of everything else, fighting insurance companies, feeling the pressures of work or the stresses of not being able to work, caring for dh's or elderly parents who have their own medical needs or challenges, raising young children, finding another lump, or going to school and working full time...you are my SHEROES ladies!!!!



SIS Kimberly