For those starting chemo in June

mary1220 · October 2004

Hi PJB and girls, I know, OH Sh%t one of Mary long a#s letters, Hope everyone is fine. PJ, I am doing great. I get tatoos tomorrow and I wear a button down shirt of my husbands(flannel)I am in and out in 10 mins. Now I get there about 5 mins. early and there is a little ol guy there waiting as his wife is right before me. I saw them at oncs. office when I was in chemo. We started talking a couple days ago this little man and I. I was a little timmid as I didn't want to say anything to upset him because I know his way of life is different than mine and I wouldn't want to say something wrong, (If you can believe I can do that, I know its hard to believe but it can happen.)I know they don't use electricity cars etc. but I guess they are getting more into the modern ways of living as he has a car and travels sometimes to visit. Anyway hes a wonderful man and we talked about b.c. his wife is maybe 60ish.and she has infiltrating lobular.with her2. I said I had Her2 also. Now here is Amish people who lived by the land, no chemicals to grow food and no cars or electricity and lived simple lives and they get cancer too. They do have a car but I am sure there is a horse and buggy in the garage. They are cute with his beard and her in her dress and head gear as they wear that anyway.There is Amish country a few miles from my treatment city. We have been there before a long time ago. Its different. I think they are getting more modern now but you still see them on the road in their buggies and black clothes. This coule wear grey and blue so they are getting with it in this world. I guess my b.c. may not all be my lifestyle it must be in the air we breath. Oh well, found that interesting.I talked to my oldest daughter about me being tested for her and other daughters sake cause not much I can do now. She said she knows she has a 50/50 chance with or with out testing and she would rather not know right now anyway. I am going to ask about if IDC can be handed down in the form of another type of b.c. or ovarian ca. I think IDC is different than the others but I may be wrong about that. I will have to do some investigating.I know Her2 can be in pancreatic, lung, ovarian and some prostate cancer but, thats the only ca. its found in except b.c. Oh lord my pickeled chemo brain. PJ, I notice if I eat salt my tongue gets swellen and fells sliky for a while and I love salt and eat a lot for my blood pressure but have cut down until chemo tongue is gone. Got my mouth rinse and its doing good if I stay away from a lot of salt.I have heard you can get side affects for up to a year after randomly off and on but not real bad.My pain is better if I don't sit too long like more than 3 mins. The muscle pain is o.k. but bone pain not gone.Have to go, Mary

janie44 · October 2004

Mary, Good luck with your tattos. Paula, as strange as this sounds, I hope you burned your tongue with coffee or something. Renee, not long now!

I am still in JAX. Refresher workshop on Borderline Personality Disorder tomorrow. Treatment went pretty well. Talked to Onc and we agree to do rads and the beginnngs of Herceptin here. If we can find the same trial going on closer to where I live, we will finish Herceptin there, after rads. The scales were not calebrated right or something and it showed a 22 pound weight loss. The onc says, You did not lose 22 pounds. I said I know it but if that's what it said, I wasn't going to argue with it. He took me back out and got a true reading. My counts were good. I drunk iced tea before chemo and had to run to the bathroom two or three times.

rlswkndr · October 2004

i go back to the Dr. this morning for my hand and to check blood levels. The swelling has gone down and now I have a red, wrinkled hand. Quite a sight! People dont' know what to look at my hand or my bald head. It is still painful and needed my pain pills at 2:00 a.m. to get back to sleep. I never took pills before- I had to throw out tylenol because it would expire! Now the bottles are lined up- take with food, don't take with food, dont' take with the other one- ugh- I have to write it all down!
Hope all is well with everyone else from rads to sore tongue- it's always something new.
Renee

PJB · October 2004

Janie, I need a scale like your doctor has! How will you do your rads in JAX? Will you just stay down there? Or did I misunderstand?

Get this. Got flashed again at the rads place. Same old guy, or at least it LOOKED like it. I guess I should have said something last time so he'd cover up. I need to learn to keep my eyes on the ground when I'm there, I guess.

Also got my flu shot. I thought before she gave it to me that it couldn't hurt as much as Neupogen. Wrong.

Renee, I hope the doc can do somethign more from your hand. I"m glad it is a little better, but it seems to be taking a long while to get back to normal. I"m with you on the pills. I HATE taking even vitamins (in fact, i got chewable ones, but they aren't Scooby shaped or anything cool). I can never remember.

Mary, gonna have the little ones this weekend?

mary1220 · October 2004

Well girls hows everyone? PJB,Bare with me a minute, you just can't stay out of trouble. Are you sure this is the same man? How can you tell? I hope he never drops anything man, That could be a sight.Well just wanted the bare facts and to clear up the loose ends.The bottom line is keep your eyes to yourself. Just think of the sight if he turned it around I think its better as it is. Hope your hand is better Renee. I like that scale too man. I had to buy a maple bun candy bar today. Can't find them anymore except a little old gro. store and I love those things. Well one more week and I am outa here and in sunny Az. I would love to live there but don't know if I will retire or work the rest of my life.Oh well a few days there will be great. The restaurants are excellent. We love to try new ones all the time and there are soo many. I'll come home taking up two seats no doubt. Gotta go been so busy lately and bosses daughter is strange. She kinda thinks I should devote every hour I can to my job. She has never been real sick shes just in her mid. 30's and everyone should bounce back and be on the run like her. She can't sit still at all. I have put in soo many hours and not been paid for it and not gotten raises like I should or bonuses especially since she took over her dads finances. I love her parents but now that shes taken over I am considering looking for another job. After 8 years of loyality I get a 50.00 x-mas bonus and 2 Hollidays off a year and 3 days vac. I have had 2 raises and the daughter thinks I am over paid.They spent more on one trip than on help and they traveled the world many times over..They give away a lot of money but hate to pay the help, The daughter loves having money you know.Its all the status in the community. Gotta go blood is boiling Hugs, Mary

janie44 · October 2004

Hi all,

Bone pain is setting in. Had one workshop today and another tomorrow. It is not easy to sit there all day. I drove from Jax to Orlando tonight and then will drive back home to GA tomorrow.

Renee, hope you are getting better all the time.

Mary. Life is too short to put up with with those who don't treat us right.

PBJ, Glad your rads are going good.

PJB · October 2004

Mary, I have to agree. What a b!tch the woman must be. Do you have other opportunities close by you can explore? You're obviously a nurturing person; seems to me you'd be worth many, many, many times your weight in gold.

I'm glad your trip is almost at hand. That'll be a great break. (3 days vacation? Is that even legal?) And warm weather...

Janie, Renee, you're in the final laps, right? Then you can look forward to maybe getting mooned by old men at rads. (I mean, ,should I say something to the techs, like, can you please tell that man his bum is hanging out? Once was bad enough...)

mary1220 · October 2004

Hi Girls, Well PJB, I could always go to a hosp. or other in home. I have people call me often to see if I can work for their parents or parent. My boss was a kind and fair man and now he has a real memory problem. He would be upset if he knew his daughter was being like that. I don't want to cause problems so I stay silent and bite my lip. They save about $25,ooo a year with me working nights. I have worked 2 years nights and days. If I were to go to a hosp I would indeed make a little more money especially after 8 years but there is little stress compared to hosp. I do have stress though. This girl will say I know of 2 people who had mast. and they don't have to get chemo. and they are cured. I just get tired of her remarks sometimes. I consider her stupid. If I quit her dad would go down hill. We are very close. She'll catch me on a bad day and I will set her straight.Later Hugs Mary

janie44 · October 2004

Hi Ladies,

I am FINALLY home from Orlando and plumb tuckered. My boob is acting up again even though I am still on antibiotics. Does it ever end?!? Seems to always be something. Later Girls. Janie

mary1220 · October 2004

Janie sorry you are still having trouble but it looks like one of those things that will take a while.I hope it starts getting better for you. You have had such a time with it. I wish I could do something to help. I have the two boys tonight 12 and 7. Everytime we go to walmart I tell them they can get something and they don't want to spend my money and make me go broke.I think they are going to help me give out candy tomorrow as I get a lot of kids. I think they bus them in sometimes. Well Better go we have a soccer game tomorrow in Springfield so we have to leave by 7 a.m. to go by get dressed at their house and get to the game by 8:30a.m. I am getting my x-mas shopping done a little at a time.We go to stores in old Scottsdale that have inlaid tile tables that have lizzard and southwest designs in them and they are sooo beautiful. I want some bad but ouch are they expensive. If I could afford a house like some I have seen down there with 10,000sq. ft. Wow the art I could put in it. I love the southweat architecture. Unless I win the lottery and I don't play so there we have it. I will never know what a house like that is like. He$l I'd get lost and forget where I was and where I needed to be with my chemo brain in a big house like that. Well I am done dreaming. Better go. Hope everyones doing good and has a great weekend. Hope PJ and Renee are having a relaxing evening and Janie too. Hugs Mary

janie44 · October 2004

Mary, you do help, by listening to me vent and sticking with this thread although you have completed chemo. Your comments and humor help a lot too.

Catch you later. Janie

PJB · October 2004

Mary, I'm impressed you've started Christmas shopping already. I'm in flux as to what I'm doing for Christmas now. Looking like I'll head up to Madison sometime in December, but probably not on christmas itself.

Playing soccer indoors today. Should be interesting. Hope things are going well for you guys today. Paula

mary1220 · October 2004

Boy half my candy is gone. The grandsons stayed and passed it out for me. I was at the Mall today and stopped at Zales to gander at jewelry because by golly I can't have enough.A woman asked if I was a surviver and I said well not yet I am still in treatment but hope to be. She is 5 years. Said when she gets pain for a while it scares her. Gee the good times just keep comming with this pary. PJB, I am on a roll with the x-mas shopping. I wish I knew what to buy everyone. I am affraid if I get fatigue the 4th. wk or so I wont get it done and bad weather there are days I may not be able to make it to Springfield and there isn't much here except Wally.You know its clean house or shop and well I an not dumb. Well maybe somewhat cause I still have to clean I just have to do it faster when I get home. My daughter has decided we are going to drive down to Mexico next Sat.She said there are good buys and a beach so we shall see. I hope my hip pain is better without the humidity. If it is I may stay in Az. I wish. Better go I am tired. Good night Girls, Hugs Mary

janie44 · October 2004

Good evening. Had to go have my ear irrigated and got drops. At least my inability to hear and mild ear pain was nothing serious, just annoying. I went to Convenience Care to avoid taking any more time from work. It's been a rough shoulder/neck/back pain day. I felt like a shot in the shoulder blades would be wonderful, or a sit in a hot tub at the very least. I plan to go see my usual shoulder guy before rads to see if he can help. I used to get a shot about once a year anyway. An old injury left me with bursitis and arthritis in the left shoulder. Now, my surgery left me with a matching right shoulder, painwise. My shoulders/neck is where the Taxol seems to take its deadly aim. I guess it goes for whatever ails you in the lst place.

Hope you guys are enjoying the weekend. Warm Fuzzies. Janie

PJB · October 2004

Figures, the first time I work a Saturday night in 15 months, the stupid Baylor Bears beat a ranked football team. So much for me leaving early. Now I have to redo my front page. If I were on chemo instead of rads, no way I'd be able to handle this stuff, this late.

Had to rant a bit. Thanks for listening. Hope you all are OK. It's supposed to rain tomorrow, but I'm hoping it holds off so we can have a lovely Halloween.

mary1220 · October 2004

Janie, I too have shoulder and neck pain which gives me a headach. I have an old water skiing injury and the Tax. made it act up a lot. Now the way I lay for the treatment (rad) it bothers my neck even though it's a short time. Good up off and on all night, Mary

janie44 · October 2004

This pain has done a number on me this time. Maybe did too much with the two workshops following the chemo and all the driving. I was up vomiting during the night. I hope things are better tomorrow because I have a full day scheduled.

PJ, I hadn't thought about the news changing your work schedule. Of course it does. You will be one busy lady this week. How is your sister holding up? I think the first stages of not knowing were the worst, emotionally.

Mary, About how many minutes are your rads? The discomfort is what I dread about them. Also, my tremor does not allow me to be completely still. When I had the PET scan (I think) I had to have my hands over my head for a good while, but I could at least move them. Even that was excruciating.

Enjoy the day ladies.

mary1220 · November 2004

Janie, My rads. only last about 7 mins. Well they are two 45sec. rays but to get in position and they have to do the machine and change the med. screen. I think it's my head turned to the left and my right arm is above my head so thats what makes it a little sore. I hope my back and hip get better soon or I will be going in for that. I know its the old disc. problem. Had a lot of trick or treaters. Grandkids helped Sat. night. then they went Sun. night. Up an hour early with the time change. The weather has been wonderful for the end of Oct. Well only 4 days of work this week. It will be so nice to get away. Later girls, Mary

PJB · November 2004

Janie, it sounds like you need to give yourself a break.

My arm's up about 5 minutes in the support thingies in the rads room. I guess I'd just make sure I talked to the rads onc about your concerns.

Mary, are you packed yet? You deserve some relaxation, too. It was a hot walk for trick or treating last night, but we had fun. At least it didn't rain cats and dogs. (Altho while we were gone, goldfish No. 2 died...)

Renee, hope you're feeling OK. I'm off to rads. Take care all

mary1220 · November 2004

Hi Girls, Well PJB, sounds like you and Nathan had fun lastnight. He will soon learn like my kids to hide his candy.(from mom)Renee and Janie hope all is well. Saw Walmart was putting out the x-mas candy today and they had the chocolate covered cherries(with the cream center) so I bought one . O.K. two but thats it for a couple days. I have my bags packed and snacks ready. It rained all night and day. Gee the sun never comes out here in winter. People get that not sunny depression around here. Janie you know about that I bet. People have to sit in lights to help and I can see why. It does affect you when it's cloudy so much. You don't feel good and you are tired and cranky. I have some magazines and thinking of taking dvd player. Husband is getting on my nerves. He is hyperactive really and it bugs me.He took me to treatment today and dozed off!!! driving on the highway!!!! we cruised over the line a bit, a bit more and I was on the phone with my daughter in Az. and I said scuse me rick, Rick can you get in our lane? there was a car headed right for us and we were 1/3 over the line. He quick got back and said "I dozed off" what the H#ll he dozed off? how the he&l do you doze off at 10:00 in the morning after sleeping all night? My daughter wanted to let me go because it apparently takes two of us to drive and she thinks we are too old to be out by ourselves.We "scare" her and I am sure she called the other two kids to let them know of our senility because "she" has always been the informer.(tattletale)They are no doubt all plotting to get us a driver so we won't kill ourselves on the road. I must admit I am the better driver. He took me because he was affraid if the rain got heavy I would have an accident. Thats a laugh at this point. Gotta let it go. Well now my hair that was mostly grey but did have some black in it will be completely all grey thanks to Rick Knievel. Thats the last time he drives me. Well I better get ready for work. Hugs girls later. My puter is broke at work. Bosses son got a virus in it when he was down to visit.Hugs, Mary

janie44 · November 2004

Good evening ladies,

Hope you all are well AND safe. Mary, do I have a driver story to tell you, but another day. My pain is not as bad today. The Darvocet worked well for me. I had back-to-back meetings at school.

Yes, there is definitely a seasonal depression and Christmas is the peak session for depression.

PJ, you are right. I do need a break but there is no way to get one when I'm in the thick of things. That is why I am taking some time off.

I didn't have many trick or treaters. Of course I bought treats that I like so I could enjoy the leftovers.

My daughter returns from her trip tomorrow. I have really missed her being just ten minutes away.

PJ, Are you ready for tomorrow? I doubt you all will put the paper to bed until the wee hours. I just hope we know who wins this time.

Renee, Hope you are doing better.

Warm fuzzies to all,

Janie

PJB · November 2004

Well, Janie, my boss almost ordered me to not work tomorrow night. So, I'm gonna do the setup during the day as much as I can and enjoy my first election night at home in 20 years. (My first was in college; Reagan's re-election. Boy, were we bummed that night. But at least it was over in one night)

Saved myself from "moon" man today. When I went into my dressing room, I peeked in the one opposite and saw shoes I recognized from the last time I got an eyeful of gownless backside. So I kept my door shut until I knew he was safely in HIS dressing room. (Did I already write about this? I can't remember...)

Mary, my husband and I stay off the road on Tuesday mornings between 9 and noon. We know my husband's stepdad could be driving somewhere near us and we're scared to death. He's a true menace at the wheel. Of course, matt's mom almost sideswiped a car when she drove me down to rads one day. Good thing they're not on the same road as your hubby...

Eyebrows are almost back. Now it looks weird to have them. I think I'm seeing quite a bit of gray up top.

Janie, glad the drugs are working. Renee, hope you also are feeling better. Mary, are you down to counting the hours til your trip yet?

rlswkndr · November 2004

Sounds like everyone has some 'chilling' tales this Halloween weekend.
Mary- my husband doesnt' dose off- he gets so focused on the road, he pays no attention to any thing else. Just as scary. A few days in the sunshing will be awesome. I am one of those that needs sun, I put my chair by the window and let it shine on me (when it finally comes out)
Janie- Glad your drugs are working... we are nearing the end of our chemo.
PJB- we are in the country and don't get trick or treaters- I do miss those little cuties!
We had a great time in Door County. We did some wine tasting, lots of eating- especially cherries. Seems cherries have some great healing qualities. Every where we went, the sales people would tell me all about eating cherries daily to help me thru treatments. Sounds good to me since they are so tasty. My sister took good care of me, opening my pill bottles,cutting my sandwich, all those little things my hands don't want to do yet.
The pain is mostly gone. I do wake up once during the night and need a pain killer. Instead of my hand being bright red, it is brown and starting to peel- very attractive.
Neuropathy in the right thumb is still there. Hope it is gone soon. Last treatment is Thursday and praying it won't be postponed.
Renee

mary1220 · November 2004

Hi Girls, It sounds like you had some good wine and cherries Renee. I bet its beautiful up there. We have thought of going up to the Wis. Dells but just haven't gotten there. My bosses kids and cousins and families all go to Boyd resort every Aug. Its always cold and rainy and they go same time every year. Guess they like sitting in the cabin for a wk. with a fire and blankets. I would opt for a sooner date but thats me, Well I would not go because I am not a camper or fisher. I once was don't get me wrong I grew up on the river running lines with my grandpa but that was then and now roughing it means to stay at the Motel 6 and eat Long John Silvers. Thats as camping and fishing as I will do. Ever take 3 of your own kids and 2 friends of kids and go tent camping? A couple of those GOOD TIMES and you will never look at camping as a vacation again. You wont even have a brain when you get home. Your a babbling idiot. I learned the hard way that vacations aren't for children. We had the balls to take them on a road trip to Fla. to Disney. That was a painfully enchanting vacation. I saw as much of Mickey as I wanted in about 10 hours. Its great, once. It took at least an hour waiting to ride one ride. This was back about 18 years ago so I can only wonder how crowed it is now and how expensive. It was expensive then. Oh how I pray my children get to experience all the GOOD TIMES I got to enjoy raising them One can only hope. Hows Janie? Glad your daughter is getting back. I know what you mean being without them . You really miss them being around,(even if its for money, at least they stop by to pick it up). Just joking. Glad Renee's hand is better. If people stare at it tell them your Steve Erwins wife and a gator got you. My eyebrows seem to be growing back all of a sudden and the lashes are too. They look a little like someone set them on fire but they are there. My gimp a#s hip is better today but it will be back tomorrow. PJB, you should be getting close to the end. You lucky duck you. I bet you'll miss your " room with a view". I bet the phrase "bottoms up" will have a whole new meaning from now on.Have you girls noticed how nice and polite people are to you now? They would probably never even give me a second look but they speak and call me honey. I try to smile a lot especially if someone looks like they are having a bad day. I feel if I smile I can't feel bad and its true so I smile most of the time. Some days I am in a bad mood and say ah, screw it and I frown and try to make my husbands day bad too cause its usually some stupid thing he did that put me in a bad mood. Joking (somewhat.)Hugs, Mary

janie44 · November 2004

Hi all,

Tomorrow is number 10. My new schedule came in the mail yesterday. It has my consult with the radiologist listed in a couple of weeks. It is the same lady I talked to before. I really liked her. Talk to you later. Tomorrow is an early day. Don't know how much longer I can watch the race to the White House.

PJB · November 2004

Renee, Congratulations, you're done! May all the crap that comes with chemo soon be gone. I guess I'm about 7 weeks out, and I do feel SOOOO much better.

Some good news. My sister's lumpectomy was today. They took her sentinel node only and said the others looked good. Will get the pathology back on Monday. Hopefully, this will end up meaning rads only.

Mary, you leave for the trip tomorrow? How did you get them to let you leave in the middle of radiation? HOw's it going?

Janie, how are you feeling? Only 2 left!

mary1220 · November 2004

Da&n thing lost my post. Congrads Renee I am so happy for you. Come on Janie you are gatting there too. Hope the hand is better and the port is drying up and healing. PJB, glad your sister is getting a good outcome. If she is under 1 cent. on her tumor and no nodes she may just get rads. That would be great. She has great support in you.My husband and I are both working tonight and he is getting off at 3 a.m. because he can't sleep on the plane, he has to backseat fly I guess. I am getting off tomorrow at 9a.m. We have a 1 and a half hour drive to St. Louis airport and there has been road construction on that road for years. It's never finished. We have to leave by 10a.m. our flight is at 1:20. I knew you could miss a rad. here and there and make it up but my rad. Dr. said I could have a 4 day wk. end off because I would be 2 hours going and back with treatment and I would be going northeast and then southwest to get to St. Lou. Well girls we are doing take out and I could lie and say I have a lot to do but truth is I just don't feel like freeking cooking. Hugs, Later girls Mary

janie44 · November 2004

Yippee Renee! I have two more and will join you in a couple of weeks.

Paula, your sister's prognosis sounds very promising. I know it is a big relief.

Mary, be careful driving. Your roads sound like ours. Construction is always going on in GA.

I feel ok so far. The pain will probably set in tomorrow. I am at a conference in Savannah. My daughter drove me here yesterday after treatment. I guess she is my designated driver since I was under the influence of sedatives and chemo. The conference ends around 11:30 tomorrow. I almost didn't come, but I need to stay current and this one always has a lot of information. Just about every special ed director in the state always attends this one.

We are getting ready to go to the Crystal Beer Parlor. Sounds like a dive, but it actually a wonderful little restaurant with the best crab stew you ever ate in your life. Then we plan to hit the candy store on River Street. Watch at scales, here I come.

mary1220 · November 2004

Later girls big hugs Mary

rlswkndr · November 2004

YIPPEE- my last treatment went well. They were very careful and gentle. Of course, many Dr. and nurses had to look at my hand. Most said, that looks really bad- my reply is it's alot better than before.
Still hurts, but the steriods help some of that pain and I haven't had to take my strong drugs for 2 days now!!
It is starting to peel so it looks pretty gross.
Janie- Almost there for you too. Just 2 left?
Mary is off on here tour and she should have a great time.
Paula- Sounds like good news with your sister- We'll keep praying for that!
Take care ladies.

For those starting chemo in June

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