Dis Breast Cancer Survivors - GAGWTA!

[laurabelle]

Ann- Thats so funny about thinking like your sister! And yes, you have to be careful how you handle it...you can attract flies with honey too!

Laurie- So far, the only month I haven't visited WDW is June! I love it at Christmas, but I'm a nut an dlike it there when it's hot! Ok, not hellish hot...I know it can be awful! I already told the family we need to buy new ponchos, they get funky from being stored.

Here's my Dinner ADRs (subject to change ) * these are new for us... obviously we wanted to try lots of new places!
Le Cellier
*Hoop Dee Doo
*1900 Park Fare
*Coral Reef
*Spoodles
Chefs de France
Crystal Palace- We haven't eaten here since our first Disney trip! We were looking at our photo album from then and talked about how fun it would be to get the pics with the girls now as a comparison!

hey where's the Piglet Smilie???

 

[snappy]

OK, Laura, let me see. We have been now in January, February, April, May, June, July, September, November. I think that is it. . . so far.

We have March, August, October and December yet.

I really liked all except the July one. We had fun because we stayed at OKW and the Omni which had awesome pools and a great lazy river. We spent more time in the pools at both places than in the parks. It really did not matter since we had annual passes. Even some days in May can be killers, but I do believe July and August are the winners in the heat contest.

I really like your ADR choices. You are going to have a great time.

Ann, what size shirt did you get in the men's. I am thinkin I need medium. I wanted the lavender one, but they only have medium left, I am really a woman's large chest wise. Large is good for me in Columbia's ladies size.

I know what you mean about sun conscious. I am a real stickler about DD10 having sunscreen and a hat. She is a very very fair redhead with blue eyes and a very longish white neck. It is not only her face and neck, even her arms and legs are pasty. She is athleticly built so she is not a Pillsbury dough boy wannabe, thank goodness. DH is another hat person, although he favors plantation straw hats. He is very bald on the top of his head so if he does not cover up, that skin would really be exposed. He is the one at WDW you might see with the very garish purple and gold LSU baseball hat and the greenish N. O. Jazzfest alligator shirt. Hey, he is easy to spot in the crowd, I don't think I have ever lost him at WDW.

My dear sister just called, her hubby works for Shell and they were offered discounted Jazzfest tickets. Can't wait to tell DH. I think we are still going.

We are having our annual caterpillar invasion. The exterior painting project is on hold till they do their thing and die. It is so creepy. My mom called me earlier, she has actually got the stinging kind all over one bush and they are migrating to her azalias. DH is going to spray em right now.

I hate having caterpillars. Sometimes I wish we did not have these darn trees.

 

[Dan Murphy]

Just talked to Beth (MinnieM3) and Jim in New York. They had arrived there yesterday, rested up for today's visit to Sloan. They had their visit and time, most of the day, with the oncologist there, who Beth said was great. Jim, a pharmacist, told Beth the doctor, in his opinion, really 'knew her stuff'. The doctor pretty much fully concurred with the findings of Beth's oncologist back home, said the doctor/s there were right on target with Beth's current cancer being metastatic breast cancer. She also went along with the method of attack as being an oral chemo, Xeloda.

Beth sounded great, as did Jim, though understandably somewhat let down, hoping maybe some other dx. But also looking forward to getting under treatment when she returns home next week.

Tomorrow, they move from the hotel that is near the hospital to a nice Embassy Suites hotel in the Battery Park area, near the tip of Manhattan. Beth and Jim are looking forward to taking in some of the sights, Times Square, Empire State Building, FAO Schwartz, Disney Store, and so forth.

After about 45 minutes, I thought it good to let hem both go and get a good, well-deserved rest before their busy day tomorrow. They are looking to return home Sunday, so will have a few days to take in the sights, sounds and smells of busy NYC.

Continued prayers and good wishes are with you, Beth.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Dan- It does sound like they are on the right track! Yes, wouldn't it be nice to hear a different dx... I know how anxious Beth is to get the weapons out and start attacking! But I'm also so glad she and Jim have this break where they can enjoy the sites of NYC and each other!
I will continue to lift them up in prayer...
Thanks so much for being there for Beth and Jim...and all of us! Your caring support means the world to us!

Laurie- Yes, out of all the times I've visited WDW, July has been the hottest, August and mid Sept have been the wettest! The funny thing is, being prepared for it and expecting it, it's not so bad. I don't know, I'm not high maintanence when it comes to stuff like that, like my hair doesn't have to be perfect (hmmm... well, we know where that comes from...after being totally bald, there are no bad hair days, if you have hair, it's a good hair day! ) I guess we're just go with the flow types. But during a trip we did last Oct. we got caught a torrential downpour (this was right before Wilma hit) and were stuck in the shop at the UK for a while. We didn't have ponchos with us, and decided to wait it out a while before we bought some. Well, my sister and nephew were with us and my nephew (18) couldn't stand it anymore and bought himself an umbrella ...what do you know, not 5 min. later, the rain stopped!
Jazzfest is in May, right?

Well, I have a funeral to go to tomorrow. Our friends, who our girls go to school with, the dad has coached them both in basketball and we all get together with a bunch of other families for potlucks...his mom died of cancer. She was dxed with pancreatic cancer 18 months ago. Initial treatment was successful, but she recently found out she had extensive mets. They were able to bring her home with hospice to die. The last time I spoke with my girlfriend, she said the past 18 months really brought the family closer and her girls got to know their grandmother well. They will have some really good memories of her. That's what they need to focus on...
Our school's spring break begins next week and our friends had planned a big trip to Hawaii...I'd say that's perfect timing.

 

[NHAnn]

Condolences to your friends Laurabelle

Dan....thanks so much for passing on the update from Beth! I too am glad they have this time together experiencing NYC...and then on to the battle at home. Adding my prayers of course.

Timing of WDW trips.....let's see....we've done January, February, April, June, a couple of Julys, and December. January 2005 was superb,we hit a warm week avg's near 80 and no rain at all. Kids liked Feb and especially April (lots of swimming) . The June and July trips were very very hot preventing the walking pace I prefer But I'd rather be hot there than here

We're off to take DD to her primary doc this morning.

have a good day ...

GAGWTA!!

 

[Pea-n-Me]

GAGWTA!

Glad to hear Beth is hanging in there. Thanks for posting, Dan.

My appt went well with my radiation onc. She seemed kind of down yesterday, I asked if everything was ok and she told me she lost her brother recently of a sudden brain tumor. Interestingly, she said that prior to this happening to her own family, she saw what her patients go through, but she never felt it. Big difference, she says. I agreed. We spent a while talking about how none of us really know what the future holds, and she said that that's why she's always believed we need to live our lives to the fullest today. Agreed again.

We had a crane accident here in Boston the other day. It fell several stories, and killed two people on the crane and one in a car on the ground. The one on the ground was a resident at my hospital, 2004 Harvard Med School grad, doing great research and work in neurology, expected to go on to great things. Last summer another of our doctors was killed on a motor scooter driving home from work. I guess we really don't know.

On a happier note, let's see, we've been to Disney in January, February, April, August, Sept (several times) and October. I agree those Sept afternoon rainstorms are a bit of a pain, but we always just keep going also. I think if I had to pick a month to go every year I'd probably pick January because the parks were so manageable. Granted the air was chilly at times, but DH prefers that to the heat, and it never stopped the kids from going in the pools, LOL. The one thing we hated about April was the roving, unsupervised gangs of teenagers celebrating the end of the school year. They put a damper on our trip because it seemed to be a free for all and they didn't care if they pushed and shoved, made out, swore, etc in front of us and our kids. It got old really quickly. One group thought it was funny to rock the boat on PoC. Uugghh.

It's that time of year again, getting our Relay for Life team up and running again. Have to attend a Captain's meeting next week.

I have my HIDA scan tomorrow morning, 7am. Funny thing, my FIL had one this morning. He's had pain for about a week. I was talking to my DSs friends mom yesterday who is also having her gallbladder out soon. She had her pain for two years too. Hmmm. Sometimes I think men are taken more seriously than women at times.

Have a nice day, everyone.

 

[snappy]

No wonder you like that doc, Linda. I really like it when one of my docs opens up, and I end up feeling I know them on a personal level.

I had several great docs like that in New Orleans. My high risk doc for DD10 was a prince. He was a LSU professor as well. He was so nice, it kinda made up for the fact that HE WAS AT LEAST 10 YEARS YOUNGER THAN I WAS!!! Even though young, he was very cutting edge. Maybe they do it all the time now, but he had one case that was written up in the local news. The baby had a medical issue, can't remember what it was, but he did a procedure in utero to correct it. It was interesting because he and his wife were expecting at the same time. He was also Catholic, and he was very open about what he thought about me taking the screening blood tests for genetic abnormalities. He advised me that no priest would condone an abortion even if there was a major abnormality. Naturally my blood test came back showing a problem. He did an amnio, and everything was fine.

The best part was that after I delivered, he was in seeing me the next day. While he was still in my hospital room, he received a call from his wife, she was starting labor. She had their baby two days after DD10 was born, in the same hospital.

I also had a very good endicrinologist at Ochsner who was amazing. He talked to me about all kinds of stuff. He was researching a family who had an unusual genetic normality in many family memebers. He had these neat charts everywhere. He was one interesting dude.

I like my OBGYN that I have now very much too. When I asked her what she thought about me having reconstruction, she was very positive. She also gave me very good feedback about what she has seen problem wise in her patients over the years. A woman's perspective is very good for this issue.
She even shared info on her own medical stuff. I was really surprised but it helped me look at it in a different light than the plastic surgeons who are so gung ho.

 

[NHAnn]

Linda that crane accident was awful.

Speaking of doctors, it was so nice to take DD to her ped this morning. (Wish she'd been on duty Tuesday!) She is a few years younger than me..she joined a small pedi practice here in town with one very old school ped and one younger male doc when I was pregnanat. One of the female OBGYNs in my group recommended I talk to her about signing on as a patient. We met and talked about 4 weeks before my due date, and clicked right away. We ended the conversation with her saying "just give us a call when your baby comes and I'll be up to introduce myself to Baby!". Less than a week later DD was born, early, and there she was the next morning with a smile and "S, she just couldn't wait to meet me!!" The practice she is with has grown and expanded, but DD was one of her very first patients....in her chart she still has drawings that DD made for her when younger, newspaper clippings from a couple of grammar/high school reports. Always a very personal interest in DD's overall life/health...how things go in school, how she fared during my divorce, remarriage, etc. She'll retain her patients right through college but DD is now torn about leaving and going on to a "grown up" primary doc...she goes to most of her appointments alone now (unless too sick to drive) and feels a little out of place among the little chairs and toys in the waiting room . She spent a good 30 minutes with us this morning going over the events of the last few days and an exam and then just conversation.
(DD is starting to feel human again but the doc advises staying home through the weekend...wrote her a note for taking back to school next week.)
Really humanizes health care to have that kind of relationship with a doc.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Linda- I hope your scan went well and you don't have to wait too long for your results. Just curious: Do you go through your hospital for all your med stuff or somewhere else? That accident sounds horrible...
I still haven't done RFL, I end up doing 2-3 RFTC events. When I have my SIS meet in San Francisco we're doing this walk: http://www.faithfancher.org/walk_2006.shtml

Ann- How's your dd today? That's cool about her ped. This is funny, every one of my kid's docs, ped., dentist, allergist...ALL Disney freaks!!! I ran into the allergist at MCO coming back from his dd's dance competition one year, the dentist has his whole office decorated Disney and his dd did the college program. She worked the small world ride. The ped. goes to Disney at least once a year. And the original ped. we had before we moved had a grown patient who played Snow White...

I have changed my ADRs already, the people at CRO must think I'm completely insane! My family totally doesn't care where we eat, I just want to try some new places, and with free dining, I don't have to worry about the cost!

I had to increase my steroids, I'm getting symptomatic again, probably due to all the stress with hubby the past few weeks. My GI doc wants me to stay at this level until my next Remicade infusion in 2 weeks. Then if I can't wean off the steriods after that, he wants to start me on 6-MP, an oral chemo that is an immune suppressant, which would have to be oked by my onc... but enough of that icky stuff.

I'm going to the Komen MD conference today. I signed up for "fun" sessions: Yoga, Complementary Medicine, and the Young Survival Coalition Panel where friends of mine are doing a Q&A session. Should be a good day withmy local sistas.

Spring Break has officially begun at our house!

 

[NHAnn]

Laurabelle - sorry about that "icky" stuff but have a lovely day at the conference, that sounds fun! Too cool about the Disney-nut docs

DD seems to be on the mend finally...she had a bit of a meltdown last night I think out of anxiety, boredom , frustration, and worry about all the missed schoolwork. SIgh. Her appetite is picking up but I am cautioning her to go very slowly with mild, bland stuff and small quantities. She has a hair appt today (previously scheduled to be homethis weekend) and I think it will do her good to get out of the house and get a new spring look

My LLBean order came got my lavendar shirt and a men's white one....also got these http://www.llbean.com/webapp/wcs/st...ategory=8967&cat4=6715&shop_method=pp&feat=bc I have the pink already and got the green as well as pink for my mom who admired them

and this too http://www.llbean.com/webapp/wcs/st...00135&cat4=8979&shop_method=pp&feat=ssdpb8979

and jeans for my dad's b-day coming up...and a couple of shirts for DH. It was a nice Friday pick-me-up package

Have a nice day everyone!! We'll be running errands and chores and such and then settling in for the last college hockey game of the season tonight...my alma mater BostonCollege against Wisconsin for the national championship! Go Eagles!!

 

[snappy]

Linda, how did the scan go? Do you know when you will have results? I hear you about men being taken more seriously about pain. I think women tend to put up with things more, we may complain some, but we put off doing anything about it. I always think things will improve, give it time. Two years is too long for this to go on, though.

Ann, glad your daughter is on the mend. It must be scary to get behind a whole week.

I ordered the white men's shirt from too. I can't wait to get it. Do you like the material?

Are the shoes comfy? I am addicted to berks and tevas. How would you compare them to either one of those types if you are familiar with them?

Laura, sorry you are having a flareup. I agree, the stress could be the culprit.
Just concentrate on your upcoming trip if possible.

It is spring over here too. I attacked our azalias and some other bushes today with the lopers. Now I need to do the fertilizer thing. The garbage men are gonna love me on Tuesday. We have so many caterpillars everyhere that you have to be checked every time you come inside. Luckily, they are not the stinging kind. My mom called me Thursday in a dither, she found a bush loaded down with the stinging kind plus gobs of eggs. DH went on offense and sprayed the living heck out of them.

I am pooped out big time. Yesterday DD10's class had a science project making volcanos. As the head room mother, it fell to me to round up a posse of moms to help out. It was at least 85 degrees outside after Mass when we started. First we dragged all the supplies way out to the football field.
The kids had a ball, especially when one of the preK classes came out and joined in. But gosh what a mess, especially the boys. After they all "erupted", the teacher had them dump the stuff, but we still had a lot of stuff to wash. By the time I got home I could hardly move, and I was drenched with sweat. I was useless the rest of the day.

I am glad I am room mother this year, I love, love, love this teacher. But I have come to the realization that this year has to be it. I just don't have the stamina required. All, and I mean ALL the other moms are a lot younger than me. I have already bailed out of girl scout campouts although I do help out at most of the meetings and outings other than campouts. DD10 is handicapped a bit having such a old mom. She is a doll though and never complains. She just appreciates everything I am able to do. Her attitude makes things easy. I am so lucky.

 

[micki7337]

GAGWTA! I hope everyone is having a relaxing, peaceful weekend. It's been an eventful week. I had my port installation on Wednesday morning - not a bad procedure just a little sore the next day - and we got married on Thursday.

We have been commonlaw for the past 4 years but with recent changes to the Pennsylvania laws no one could tell us how the state would view our situation. Basically, ever case is being evaluated on its own merits and we could not risk losing benefits without a proper marriage license. Soooo, off to the county building to be married by the Mayor. I begged my hairdresser to squeeze me in Thursday for a cut and color - probably my last for awhile and I was in desperate need of both! or else I was getting married with 3" roots and a barrette in my hair! She cancelled a few appointments and I now have the shortest hair I've had in 10 years. I actually asked her to give me a "wiggish" cut that I could easily replace with a wig in a few weeks.

Speaking of wigs, I picked up a catalog at the hospital yesterday that had a large selection of nice looking wigs (is there really such a thing?) The prices seemed great! Around $40/$50 each and I thought, great! I'll buy a bunch of them and keep everyone entertained! I think the name of the company was "tlc" and their website was tlccatalog.org. Has anyone purchased anything from this organization? I'm wondering if it's best to buy these things in person or if buying online also works.

I met with my radiology oncologist (sp?) yesterday and immediately liked him! He did tell me that my tumor went thru further testing (FISH testing) and that the tumor is NOT HER-2 positive - it is HER-2 negative. Basically what I got out of that is that this means the cancer is not from a genenic marker and that this will change my chemo cocktail. I did go thru some of my literature last night and it looks like the HER-2 negative is a less agressive type of tumor. The RO immediately called my oncologist while we were sitting in the office to discuss the results of the FISH test and they agreed my treatment will change. He also said I would have 3 to 6 cycles of chemo, surgery to remove just the right breast, and then 6 weeks radiation. I asked him whether I should be considering removing the left breast for preventitive reason and he said no, that there was no reason to do so because my scans have come back clean, the lymph node appears clear and he sees no indication that the cancer has spread to the left breast.

So a few more tests and I will start my treatment. For those that went thru it, is there a "better" day to have treatment? I know that sounds funny but when they told me my treatment would be weekly, I thought I would try Fridays so that I could 'recover" over the weekend and hopefully be able to get back to work on Monday. That was assuming that the weekly doses would be less harsh on my system. Now it seems like I will be on the every 3rd week cycle and the RO kept saying, "we'll hit you hard with chemo" and that I would be able to see the changes to my breast prior to surgery. Now I'm thinking that maybe having my treatment on Wednesdays would give me more time to 'recover'. Time off from work is not an issue - I have something like 43 weeks of full pay but I want to work as much as possible just for my own sanity! I have a desk job - some stress but nothing I can't handle. It's more that I'm needed in work. I have 3 employees that are still trainees and I have a new manager that I just love but she's only been in the job for 4 months and I don't want to leave her alone. Work is willing to let me work at home as well so I'm thinking it will be a mix of time off, work at home and time in the office. For those that worked outside the home, how did you handle your treatments? Was there a point were you could work? What did you do to 'recover'? Are there things you can do to lessen the effects of the chemo?

I am so thankful that this thread exists. God bless you all!! P&PD!

 

[snappy]

Congratulations on your marriage, Micki7337!!

What a week!! I don't think it would possible for anyone to top you for fitting in the highest high and the lowest low in the same week.

I can't help you with any of your questions on either chemo, wigs or radiation, as I only had a single mastectomy plus tamoxifen meds I take now.

Glad to hear both your scans and the lymph nodes are clear. Also, it is good to hear how flexible your work situation is. I can see a lot of benefit to working when you feel up to it, especially when you are needed and appreciated. It sounds like you have a great attitude as well as work ethic.
One thing I have hear time and time again from the ladies in my support group is that if you are having a problem during treatment, CALL THE DOC!!
There are changes they can make, things they can prescribe to help you. Don't be bashful about bringing stuff up. They really don't want you to be uncomfortable if there is something that will help.

I am right there with you about being grateful for this thread. It has not only helped me retain my sanity. I also have found a lot of new friends here. I am really glad you found us too.

I am betting you will get some answers to your questions from the ladies here. Sharing something to help someone else is immensely rewarding. There are a bunch of generous sistas who stay up with this thread.

GAGWTA!! And God bless you too.

 

[NHAnn]

Hello mikki....wow...busy week for you! congrats on your marriage
I did not go thru chemo so I know that others here will have better, detailed info for you. In my support group though I am friendly with a couple of ladies who did. One did took your approach to wig shopping and got quite a few...various sources including on-line...and they are beautiful and natural looking. I will e-mail her and ask about that site you mentioned.
It's good you feel a rapport with your docs, that is such a positive during treatment! My two friends who did chemo did 2 and 3 week cycles and they both seemed to be the hardest hit a couple of days after the actual treatment. But both continued working, although reduced hours, and some days off for/after their chemo treatment days through their treatment. I think everyone is different...and it is good your job offers some flexibility to be able to do what is best for you, even if your view of what that is may change as you go through it.

snappy....the fabric of the the shirts is not quite as "shiny" silky as the Columbia ones DH has, but I have no complaints. The men's white is quite long and roomy...I'm thinking it'll be really nice for me as a swimsuit cover up, and also openin front, tied at the waist, over tank tops. The ladies one, lavendar is darker than I expected but still nice, it is much more fitted. The shoes are comfy...they are like a lightweight sneaker, but good thick soles which I like . They are sized to wear with heavy or medium weight socks,fairly roomy. I actually got the new ones in a 7 instead of my usual 7.5 and they'll be OK sockless although it's harder to slip them on since there are no ties/tongue. There is not as much sole/arch support as in birks. I do really like the confort of my birk sandals DD talked me into at a shoe store closing here in town a couple of years ago. They are a plain tan suede double strap syle. I just think they are really ugly! LOL That being said I do wear them quite a bit except for in the winter, because they are so comfy . I haven't owned any tevas though.

Well, my BC Eagles lost 2-1 to Wisconsin in the national hockey championship tonight but it was a good game (a shot that would have tied it with less than 2 seconds left hit the post ), and great season for them. I'll miss college hockey for the next 6 months though.....

Linda, hope your scan went well........

Enjoy your Sunday everyone
GAGWTA

 

[MerryPoppins]

I didn't do chemo or radiation so I'm no help there. Just a mastectomy and Tamoxifen. Congrats on your marriage. Sounds like your positive outlook will take you a long way and we'll be here for you too.

I can't seem to stand any shirt that isn't mostly cotton. Shirts have to breathe or I have a hot flash. Do you think those shirts would help me too? I'm a little afraid. I might get a couple for DH and borrow them to see if I can stand them.

Both my kids have had a virus. I'm praying they don't share. Just the usual sore throat, cough, stuffy nose, etc. I think they're feeling better tonight but not great yet. I've got them using hand sanitizer and I'm crossing my fingers.

I'm thinking of all of you. GAGWTA!

 

[snappy]

Merry, I seldom wear anything but cotton as well. In fact at night I can only tolerate very thin woven cotton, it can't even be cotton knit. Even in the winter (although it really does not get very cold here, even my tropical plants survived this winter.)

One of my Columbia shirts is all cotton, the other is nylon. However, both shirts have these vent things in the front and back. I think that is the secret. I do still get hot flashes. But at least I can tolerate these shirts. I have given up all other silk, rayon, synthetic shirts. I also avoid wool (our climate is too warm anyway, as I have said). I have several cotton jeans style jackets that work pretty well when it is cold. I don't think I wore a jacket all winter long.

I even get hot in church where everyone else complains they are freezing. My son gave me a neat little fan thing that he got in a Chinese gift swap at school. It even has a clip you can fasten to your clothing. I am sure I will look very chic.

At night I find I am doing better since I bought us foam memory pillows. The material seems to breathe better. I still wake up with night sweats though.
Thank goodness for ceiling fans.

 

[Pea-n-Me]

Laura, my medical group is closely associated with my hospital, so I get my care through a combination of the two of them. They have scanners and such in my medical group's buildings, so where I go depends on where it is more convenient to schedule, they give me a choice. After the scare I had on my other breast after treatment (which was done at the medical group facilities), they said why don't you just get your tests done at the hospital from now on, and it is pretty convenient since I can just go downstairs after work, whereas at the medical group facilities it always requires a ride in to the offices.

My HIDA scan seemed to be ok, I was able to look it up myself last night at work. I have to talk to the surgeon next week to see what the next step is. Heck, as much as I like having normal tests, this is getting to be incredibly frustrating. The test itself was an eye opener. Laying in a scanner with pictures of my liver in front of my face for 2 hrs after working a 12 1/2 hr night shift was a trip. And the injection they give you to cause the gb to contract causes severe nausea for a few minutes, all the memories of the severe nausea I had throughout most of my pregnancy came flooding back and it wasn't nice. Luckily it subsided after 6 minutes or so. Tonight at a family party my FIL and I traded war stories about our respective HIDA scans, LOL.

Micki, congratulations! Definitely a wedding to remember!

Before I began chemo, I informed my oncologist I planned to continue to work in my job as a nurse, and she told me she didn't think I'd be able to do it, but said if I wanted to I could. The only requirement she had was that I couldn't do direct patient care for my own health since my immunity would be low and I was at risk of getting sick myself from the germs in the patient care areas. So I was lucky enough to be put into an educational role for the duration of my treatment. The Educator I was working with left me work to do, and they left it up to me what hours I would work when and if I was up to coming in. I also reviewed all the cardiac educational material in the hospital for the new library and I was able to do this from home, I would get a package in the mail every week for rewiew and then I would drop it in my mailbox when I was done. I was incredibly fortunate to be given this opportunity.

At first I went in my regularly scheduled hours. But as the weeks went on and my hematocrit and white blood cells dropped, I got pretty weak. Taking care of my kids just about wore me out, and my docs told me I should really save my energy for them. Once I got to the taxol and developed the muscle aches I could not even think about going in to work, and from that point on I was out pretty much until treatment was over. I also took an extra month or so just to recover, I hadn't realized how taxing it was going to be both physically and emotionally. When I went back I dropped my hours down from 3 days a week to two. I think my manager would prefer to have me there more often (I do administrativer work as well as being in charge of the unit at night), but she understands I need to be home with my kids right now and do other things that are important to me in my life as well. I understand the feeling that you have that you are needed at work, I felt the same way. But the reality usually is that they'll do just fine without you if you can't be in when you're not feeling well. You can do some work from home which is great. It's hard to imagine how fatigued the chemo makes you feel. It's a fatigue that naps and sleep don't help, either - all you can do is just ride it out as best you can until it's over. It's great that you have a lot of sick time; I did too.

I did my chemo on Tuesdays. I would feel pretty crappy until Thurs/Friday if I recall. I think you are doing it a little differently than I did, but Monique will probably have some thoughts on it since she's done a similar regimen so recently. My group gave me a strict regimen of anti-emetics which I followed to the letter. The nausea wasn't too bad. I think for me anyway, it was the fatigue which made it the most difficult, especially when you have a family to still take care of. I did take aranesp and neulasta/neupogen (for hematocrit and white blood cells) and those helped a bit. I tried to not be hard on myself and took it easy as much as I could, while still keeping things as normal as I possibly could for the kids especially - still did all of the usual activities with them. Lots of friends and family helped out a lot so I was lucky. I wore a very comfortable wig outside but around the house I wore soft cotton "lovies". I so hated losing my hair, but I have to say it has come back nicer than it ever was before, it's curly (now more wavy, actually) where it was straight before. I went to a local cancer support center which was very helpful to me, and developed a network of friends who'd also had breast cancer which allowed me to discuss my fears and frustrations with those who understood. I think that's really important for most if not all of us. This group has been great.

Sorry so long, HTH, I'm sure you'll get other replies. Hang in there, it sounds like you have a really good handle on things. We're glad you found us.

 

[MerryPoppins]

Linda, I don't remember if I told you. Mom finally got a date for her surgery. She's scheduled to get her gall bladder out on the 3rd of May. Her surgeon was going out of town for two weeks to visit each of his grown children. Mom was afraid to schedule it as soon as he got back, because she has plans the last week in April. So they decided to go with early May.

I'm hot all the time, too. I have a ceiling fan AND a fan by the bed. My poor DH huddles under his pile of blankets while I throw off all the covers. Church is one of the worst. All those people packed close together. Eek! I recently discovered sunscreen sets me off. If I put lotion on my face in Florida, I could pretty much expect a hot flash. I guess it's something about my skin needing to breathe. I keep hoping this will get better with time.

I guess I better quit and head for bed. We have to leave for church earlier than usual tomorrow since DD is working in the nursery.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

micki7337- Congratulations on your wedding! I agree, what a week you've had sista!

I did chemo every 3 weeks, it was actually a clinical trial to determine the best dosage timing and the dose dense, weekly chemo like you're getting won! So which chemo drugs are you getting? Are they all seperate or are they doing a combo of any? I did A/C together, 4 each followed by Taxol. I did chemo on Thursdays just because that's chemo day for my onc. Mondays were usually the days I started feeling "better" for lack of a good word! I had a really hard time on A/C with nausea and they never did find anything that helped me, though I did see my onc and one of my nurses at a conference over the weekend and my nurse told me my onc did a trial after I was finished chemo, using acupunture on patients who have trouble with nausea. Too late for me, but I hope it helped others!

I have heard of that wig company, I think I saw a brochure for it. Those are great prices too!

I'm a stay at home mom so I didn't have to deal with going to work. I know some people were really helped by having something other than cancer to do! The biggest thing during chemo is getting enough rest. That's when healing takes place. So listen to your body and pamper it too! When you are able, get out in the fresh air and walk, even if it's just a short one. Eat smaller meals to keep a little food in your stomach. When it was bad, I'd nibble Lorna Doone cookies, or graham crackers. Then mostly I ate comfort foods. Potatoes were good. Drink as much as you can. I could taste and smell the chemo during infusions. Plus you'll just get a yucky mouth funk...Sucking on mints candies or popsicles helps. A soft toothbrush and mild toothpaste like Tom's of Maine (there are others too) helps with mouthsores.

On Taxol I would get flu-like symptoms around day 4. It helped me to take long baths, and do meditation/visualization CDs. I was able to do more on Taxol than A/C though and even walked my first Race for the Cure on day 16 of Taxol!

That's all I can think of for now...I'm really glad you're here. You can do this!

 

[snappy]

I knew you would get some good responses, Micki7337. I think the unknown is the scariest.