Dis Breast Cancer Survivors Part III - GAGWTA!

[Pea-n-Me]

Doc said yesterday I can take celebrex every day instead of only three days a cycle since I'm having problems getting around. Has anyone else had this kind of problem/this severe with Taxol or in yálls best guess, is this worse because of my psoriatic arthritis? The nurse suggested hot yoga, but I have trouble even walking (and for that matter, typing is beginning to hurt).

Yes. I couldn't walk at one point for 36hrs, which was scary, then when I was finally able to walk, I swear I felt like I was 96 yrs old creeping down the hallway to the bathroom and taking 5 minutes to get down the stairs! I also remember it feeling like that "hit the weasle" game you see in an arcade - it felt like someone was hitting me in different areas of my body over and over. Awful. I remember my team saying they'd order me whatever pain med I wanted, but in their experience, nothing really helped. So I sort of toughed it out. I didn't know if they'd found something since then that helped. I thought there was talk of claritin helping??? The one thing I did find that some doses were better than others (note I didn't say easier; just better). IIR doses 1 and 3 were really hard, and doses 2 and 4 were less hard. I was so glad when it was over. Funny how the adria/cytox and taxol symptoms are so different. Laurabelle, my co-originator of this thread, used to say she'd just soak in a tub during taxol. I kinda just think it's something you have to get through. Meditation did help me somewhat as well.

That is just crap. My mammo saw one spot. MRI -- multiple. Why would they want to let something go longer requiring more immediate/extensive care? It just doesn't make sense to me. Isn't there a saying, pay me now, or pay me later? Except the later would be a lot more!

I know. I am triple negative, so once chemo and radiation was over, that was it. It's always been part of my treatment plan to have close eyes watching over me. (As it is for everyone, really.) Based on my personal statistics, it's not whether I will have a recurrence, but when. The whole idea is to catch it early to minimize the damage. I guess I'll have to try to explain that to the numbers crunchers, who I'm sure won't give two ****s. What do they care, really? It's not them or their loved one.

Re your friend. I know what you mean. As a hospital nurse I see a lot of what you're talking about, on both sides. Your friend needs a good social worker to help her get the services she needs for her son. Did she work with the one at the hospital her son was at? I'm shocked they'd send them home without services in place, knowing the mom needed help.

 

[Candy30]

Lisa- CONGRATULATIONS to your daughter! That is awesome she gets to work at MK. That would be so cool to visit while she is working. It's like you get to point her out and say "That's my Kid" moment!!!! Is she practicing her smile?!?!?! How are you feeling these days?

PNM/Cheryl-I hate insurance companies! The way the approve/not approve only makes sense to them and it is mostly based on $. I was on a bad insurance for a year before my hubby got this job and we are still paying for things. It was an 80/20 deal where we had to pay 20%. I must say that I could not afford my chemo for that year and prayed. I kept my tests and bloodwork going but chemo would have bankrupted us. I got on a plan that the hospital has and they helped to pay 5% of the Pet Scans and bloodwork. If I wasn't working they would pay for the full 20%. So Marcj I understand what your friend is going through. It is so frustrating. When my husband go his insurance it was a relief. I have a whole file on that insurance. Get ready to dig in PNM. I hope you are feeling better soon. Cheryl you too.

LMP- I feel bad for your son and nervous for you and that car ride. LOL I hope you can get a good flight rate. I thought too they would reduce their prices because of the publicity. That's crazy!

Snappy-TAXES! I finished that last week! And now have to fill out Fafsa for my son's school. Don't particularly like this time of year. Great news about your daughter's car.

PatsMom- Hang in there. The best thing is to try and keep positive. That energy helps.

Marcj-You too hang in there. I understand about pain. Some days good. Others horrible. Sometimes crying is the best medicine and we don't mind whinning here. To me it seems like the only place I get to whine a little.

So, My teeth are giving me a hard time. Just got another root canal done. You know its bad when the dentist says that its the only tooth that didn't have a root canal on that side . So got that done and 2 days later tooth broke so low and they had to remove gum line so that they had tooth to cement the cap to. That was painful. When I went to get fitted for that tooth another cap came off and broke part of what tooth was left. So have to get another cap....more $$$. My daughter has to have braces...which if you look at her pictures in trip report you can clearly see...more $$$. Can I be rich for while?
I am trying to ralley my siblings together to get my Mom an apt sized washer and dryer. So she won't have to go up and down steps in her new place. So far 2 out of 7 agreed so we see.

GTAGWTA

 

[Pea-n-Me]

Candy, wow! That must have been tough worrying about all the costs going through chemo! One of my friends had to forego all her antiemetics and neulasta shots, etc, during chemo as her husband had his own business and they had no drug plan. Did you ever hear that chemo can negatively effect your teeth? (And bones, for that matter.) I remember them telling me that. Since my chemo I have had problems with arthritis (pelvis, spine) and tendonitis (hip and arm). I'm not sure if it's heredity, chemo, or a combination of both (tossed in with good old age!). But there are days I'm hobbling around and sucking motrin down like it's candy, lol. Though my DH is the same and often we're sore on the same days, like when it's about to rain. I'm also affected by the fluid shifts of my cycles. My older brother has also has some arthritis and my mother's gotten like a pretzel from arthritis so I know it does run in my family as well. I guess I just wasn't expecting it this young, although I'm not as young as I like to think I am. Make sure you check on Craigslist for those up/down washer-dryers. I see them all the time, sometimes barely used. My mother has one in her inlaw apt with me and it's goinig on 16 yrs old so I keep my eye on those myself.

 

[luvmarypoppins]

Good morning ladies

Marci - sorry you are having all those pain issues.

Linda - glad your onc. is on top of the ins. stuff. I know what you mean. You have so much on your plate too without having to deal with this.

Candy - I actually thought of you when I was brushng my teeth as my gums are bleeding so much lately. My dentist tells me to rinse with ACT all the time. I need a cleaning and a visit. I am sure it will not be good news. Actually when I just had this lymph node incident the np was looking in my mouth, thinking that is where the infection might be coming from etc. I am glad you have a god ins. plan now. I am sure that is a big help.

Well ds went to school today. He actually found this old boot type thing he had from before when he broke his foot. Its an ankle type boot thing made of hard plastic. He said, mom you are such a pack rat . (I(t was out in the garage). So glad I saved it. I also gave him some pain med he had left over from his nasal surgery. He will be in school till 9pm.

Dh called when I was in the shower, But ds19 got to talk to him.

I thought our taxes were o.k. Ds were the problem. I hate form IT1098. I am so confused. I need to call the acct. back. The bursar says its not when we paid the tuition, its when they billed it etc?? We just did the fafsa for ds too. Its only for a scholarship if he qualifys. I dont know the rules yet.

GTAGWTA.

 

[Candy30]

PNM- It was awful having to worry first about not getting chemo and 2nd how am I going to pay for my Pets and bloodwork. I had a kiniption when they asked for a copya of $189.00 for my bloodwork. I had to walk away and wait until I could afford it! Frustration, is what they should call insurance instead. I have diabetes and the company did not cover my pump supplies. They were 50/50 on that. So I used what I had and only had to pay for it once until I go on my husbands. On his plan they give bare minimum but at least it is paid for.

Yeah they told me after my 3rd root canal. I am on Script Vitamin D and calcium. Plus with diabetes, my tooth goes bad from the inside out. I think I have had 8 root canals total. I told my Mom that I am going to get dentures soon. It would be cheaper!!!

I have arthritus in my foot but it doesn't bother me toooo much. On the occasions that it does, I sympathize with anyone who has it. You have to be a strong woman to deal with that!!.

Good thing you save that BOOT LMP! My DH calls me a pack rat. He usually is the one throwing stuff away! I hate that Fafsa stuff. It helps though if he qualifies. Last year he did because DH was only on the new job for 5 months. This year he may not qualify at all because of DH wage increase. We shall see! LMP did you use the IRS download to fill out the Tax info? I saw that was new on the application. I did try it and compared. It was accurate but you still had to fill out a few questions still.

 

[marcij]

That's what I needed to hear ladies. It's normal. So I can expect to have at least similar problems if not more pronounced with the arthritis. In a way, it helps because now I know I just need to suck it up, but as we all know, I don't have to like it! And it's good to know that it won't necessarily be cumulative, so maybe after number 7 tomorrow it won't be as bad.

I can't tell you how much it helps to talk freely on here. Thanks so much!

 

[wdw4us2]

marcij - Are you having pain from the Taxol or from a shot? I've had a lot of trouble during this course of chemo with bone pain which they say is from the Neulasta shots. For a week after the shot, I take Zyrtec and two B6 tablets each day. It seems to help a bit - still painful but not excruciating like it was before.

Pea-n-Me - Did you take the Motrin while you were having chemo? My oncologist won't let me take any anti-inflammatories during chemo at all - prescription or over the counter. Something about it interfering with the chemo drugs. Since I have bursitis in both my shoulders, I miss those meds especially when it's raining.

Candy - My dentist did tell me the chemo and radiation wreak havoc on your teeth. He said I was lucky to only end up with one small cavity between two teeth after the last course of chemo. Although I didn't/don't floss much during chemo (gums bleed too easily) I do use a Sonic Care toothbrush and I rinse with Biotene before bed.

MaryAnn - It pays to hang onto things! Good thing you kept that boot.

 

[Pea-n-Me]

Lisa, I don't think I took too much motrin, I can't exactly remember. Maybe a little. They had me on a cocktail of so many meds I think I tried to minimize what I did take. I remember them offering me neurontin, which I guess some people take, but I didn't want the side effects of that seeing as I was still working/driving and had the little kids at home to deal with. I do think the neulasta during the taxol was at least partially responsible for the "bone pain". If you think of what it does - stimulates white blood cell growth in the bone marrow, much of which is in the long bones - then it makes sense. But it's hard to say what percentage each contributes. I was fortunate I didn't have any dental problems, but I'd had a lot of work done prior to bc so I think most problem areas were already taken care of.

 

[Candy30]

Hi Everyone.

Lisa-What is biotene? Is it something I can get over the counter? I usually rinse with Listerene. If I don't then my gums will begin to bleed. I was thinking about getting a sonic care toothbrush. Do you like it? Can you see a difference? I hope your pain level is down and your energy level up.

Marcij-This is the right place...when you need advice , listening "ear" , "shoulder" to cry on, celebrate our triumphs (no matter how small they are), or group hug This is the place!!

LMP-Its funny how and when we things trigger us to think of one another. I don't think I have every had anyone tell me they thought of me while brushing their teeth. How are you feeling today? And your son? I just called my son's school and they told me that I have more paperwork to fill out!!!

PNM- When you were talking about age it made me think of what my Mom always says. She ages like wine...getting smoother, stronger, finer and easy going. Love her to death.

So all that talk about insurance yesterday and my husband tells me that they are changing it If I want to stay on my husbands plan we have to pay extra (no problem we can do that) and now we have a higher deductible and they pay 90% and we pay 10% after that. So I have to get my pet scans and mri for the neuro in before July when this goes into effect. They are also dropping ortho coverage to basically nothing. So it is a good thing we are getting daughter's braces on now. I guess sometimes you don't realize a blessing until after the fact.

 

[luvmarypoppins]

Good morning ladies

Linda - I say go for the pool! We had one at the house we rented in Texas. (inground) Everyone is your friend when you have a pool. I think I had 7 kids in there at once and just me. I made them all stay in the shallow end. You have to watch the chemicals and I know another poster said to get a deck too. I guess Lisa can chime in with all the joys of pool ownership too.

Cheryl - how are you feeling? I hope you are slowly recovering.

Lisa - maybe I should ask my dentist if Biotene is better than Act? Is it flavored? I like mint stuff the best.

Candy - I thought of you because I remember in the past how you commented on all your dental woes and I said how my dentist thought the radiation messed up my mouth too etc. Its good you are getting your dd braces now. We got a new dental plan and I think we will be paying alot more for the services. I think our medical is about the same.

Waiting for dh to call. It should be soon. I called the tax lady back. She said our taxes are o.k., its just ds that needs to be straightened out. That is good. Ds21 made it through his long college day. He said he broke one pain pill in half and took one in the morning and one in the afternoon. He also said people kept looking at him because the whole rubber on the bottom of the boot is worn off and when he walks he says he sounds "like a girl with high heels on"I am sure he will be happy when he can get his sneaker back on.

Oh and I called about my blood test and..YES we have a winner! The dr./nurse never called back as usual. So I am thinking of asking ds to take me for the B12 shot tomm. That is the only way I will ever get the results I think. The office is closed today. I think I should seriously look for a new gp/internist etc. Honestly, this guy is either overwhelmed or generally doesnt give 2 hoots about me. I thinks its both of them. Maye I will ask the np at the ent surgeon on my mon. visit for a recommendation.

GTAGWTA.

 

[wdw4us2]

Hi Everyone.

Lisa-What is biotene? Is it something I can get over the counter? I usually rinse with Listerene. If I don't then my gums will begin to bleed. I was thinking about getting a sonic care toothbrush. Do you like it? Can you see a difference? I hope your pain level is down and your energy level up.

Biotene is an over the counter product you can get an any drug store. It's helps to alleviate dry mouth, which I've been having issues with during this course of chemo. It tastes okay, and it's alcohol free. When I'm not in treatment, I use Listerene but the taste bothers me right now. I don't have that problem with the Biotene. I have been using the Sonic Care toothbrush for years and I like it a lot.

Went outside and sat by the pool for about an hour today. It is absolutely beautiful here today and I really needed to get out of the house. Made me want to go swimming though. I wish I had the energy. . .

 

[marcij]

marcij - Are you having pain from the Taxol or from a shot? I've had a lot of trouble during this course of chemo with bone pain which they say is from the Neulasta shots. For a week after the shot, I take Zyrtec and two B6 tablets each day. It seems to help a bit - still painful but not excruciating like it was before.

Pea-n-Me - Did you take the Motrin while you were having chemo? My oncologist won't let me take any anti-inflammatories during chemo at all - prescription or over the counter. Something about it interfering with the chemo drugs. Since I have bursitis in both my shoulders, I miss those meds especially when it's raining.

Candy - My dentist did tell me the chemo and radiation wreak havoc on your teeth. He said I was lucky to only end up with one small cavity between two teeth after the last course of chemo. Although I didn't/don't floss much during chemo (gums bleed too easily) I do use a Sonic Care toothbrush and I rinse with Biotene before bed.

MaryAnn - It pays to hang onto things! Good thing you kept that boot.

It's from the taxol, which seems to be making my arthritis flare. I did get the nuelasta shot after a/c and it did it too, but only for a couple of days. This has been the whole last week. Had Taxol #6 this morning. I feel marginally better, but I think the steroids help a bit. They've told me to keep taking celebrex, and I can either add Tylenol to it OR take two hydrocodone. I'm just trying the tylenol as I'm trying to stay in Dallas at work today (home is an hour away) so that I can go to DS15's baseball game in a couple of hours, which isn't but 20 min from work. I missed last week's game on chemo day, and although he understands, he asked me last night if I might come today. (He pitched last week for the first time and is supposed to again today.) I know there is no reason to feel guilty but I can't help it. I do. So unless I start feeling worse I'll go to the game, go home, and work from there tomorrow.

Hi Everyone.

Lisa-What is biotene? Is it something I can get over the counter? I usually rinse with Listerene. If I don't then my gums will begin to bleed. I was thinking about getting a sonic care toothbrush. Do you like it? Can you see a difference? I hope your pain level is down and your energy level up.

Marcij-This is the right place...when you need advice , listening "ear" , "shoulder" to cry on, celebrate our triumphs (no matter how small they are), or group hug This is the place!!

LMP-Its funny how and when we things trigger us to think of one another. I don't think I have every had anyone tell me they thought of me while brushing their teeth. How are you feeling today? And your son? I just called my son's school and they told me that I have more paperwork to fill out!!!

PNM- When you were talking about age it made me think of what my Mom always says. She ages like wine...getting smoother, stronger, finer and easy going. Love her to death.

So all that talk about insurance yesterday and my husband tells me that they are changing it If I want to stay on my husbands plan we have to pay extra (no problem we can do that) and now we have a higher deductible and they pay 90% and we pay 10% after that. So I have to get my pet scans and mri for the neuro in before July when this goes into effect. They are also dropping ortho coverage to basically nothing. So it is a good thing we are getting daughter's braces on now. I guess sometimes you don't realize a blessing until after the fact.

Thanks for the support. My new friends on here are so therapeutic -- I should pay you all! (But since I haven't won the lotto, I won't.)

Good morning ladies

Linda - I say go for the pool! We had one at the house we rented in Texas. (inground) Everyone is your friend when you have a pool. I think I had 7 kids in there at once and just me. I made them all stay in the shallow end. You have to watch the chemicals and I know another poster said to get a deck too. I guess Lisa can chime in with all the joys of pool ownership too.

Cheryl - how are you feeling? I hope you are slowly recovering.

Lisa - maybe I should ask my dentist if Biotene is better than Act? Is it flavored? I like mint stuff the best.

Candy - I thought of you because I remember in the past how you commented on all your dental woes and I said how my dentist thought the radiation messed up my mouth too etc. Its good you are getting your dd braces now. We got a new dental plan and I think we will be paying alot more for the services. I think our medical is about the same.

Waiting for dh to call. It should be soon. I called the tax lady back. She said our taxes are o.k., its just ds that needs to be straightened out. That is good. Ds21 made it through his long college day. He said he broke one pain pill in half and took one in the morning and one in the afternoon. He also said people kept looking at him because the whole rubber on the bottom of the boot is worn off and when he walks he says he sounds "like a girl with high heels on"I am sure he will be happy when he can get his sneaker back on.

Oh and I called about my blood test and..YES we have a winner! The dr./nurse never called back as usual. So I am thinking of asking ds to take me for the B12 shot tomm. That is the only way I will ever get the results I think. The office is closed today. I think I should seriously look for a new gp/internist etc. Honestly, this guy is either overwhelmed or generally doesnt give 2 hoots about me. I thinks its both of them. Maye I will ask the np at the ent surgeon on my mon. visit for a recommendation.

GTAGWTA.

I hope your DS feels better. Sounds like a good idea to find another doc, though it is always a pain to get the first appointment and start over. I'm not a patient person (but you guys couldn't tell that ) so I would look go crazy with all the waiting.

Biotene is an over the counter product you can get an any drug store. It's helps to alleviate dry mouth, which I've been having issues with during this course of chemo. It tastes okay, and it's alcohol free. When I'm not in treatment, I use Listerene but the taste bothers me right now. I don't have that problem with the Biotene. I have been using the Sonic Care toothbrush for years and I like it a lot.

Went outside and sat by the pool for about an hour today. It is absolutely beautiful here today and I really needed to get out of the house. Made me want to go swimming though. I wish I had the energy. . .

I'm glad you got some pool time. That is another reason I'm trying to make the baseball game -- I think fresh air will improve my attitude. I hope you feel like swimming soon. Our compound pool isn't heated but I'm anxiously awaiting the day the water warms up enough to get in. I know that helps my arthritis and would help with the latest combination of problems. Here's hoping by this weekend you feel like it!

 

[Candy30]

Lisa- I am going to try the biotene when I am in treatment. The sonic toothbrush is going to have to be a present for me. I hope this weekend gives you good weather to sit out by the pool again.

Marcij- I hope you are feeling better. Enjoy your DS baseball game! Don't feel guilty. He knows and that makes your being there all the more special!

LMP PNM- I hope you all are feeling well. Enjoy your weekend. LMP I cracked up at your son's boot sound! Hilarious!!

I am going to visit my DFoster daughter. I don't know if you all remember me talking about her. She just gave birth to a baby girls 4 weeks ago! She is beautiful! So I am a Foster Nana. She is having a hard time because her fiance was shot by a man over road rage a week after the baby was born. So we have been trying to help as much as we can. He has a long way for recovery. I will post pictures when I remember how.

Have a good weekend! GTAGWTA

 

[PatsMom]

Its sad to see how almost all of us have to fight with our insurance companies for the follow up stuff. Bladder cancer has a terrible recurrence rate - anything below Stage 2 is pretty treatable but it often recurs. And if it is high grade cancer like mine is, you have got to be vigilant! So in my medical budget I now have to include 3 month cystoscopies for the next several years, then reducing in frequency after that. But it will be at least once a year for the rest of my life. And then at various intervals I will have to have maintenance treatments, for as long as I can stand them or until I have another recurrence and they remove my bladder.

All of this is expensive! I have read of several who have no insurance or bad insurance who do not do the follow up treatment. So the recurrence isn't caught until they have symptoms. And by then it is sometimes too late - it is muscle invasive (stage 2). At that point, it is radical cystectomy, lots of chemo, and a not very good survival rate. I have some pretty high co-pays and deductibles so I am trying to set money aside regularly to keep up with the surveillance.

Because I am going to keep kicking this cancer in the butt! Just like you ladies are doing with your cancers.

 

[luvmarypoppins]

Good afternoon ladies

Linda - loved your dog pictures and Happy B day to your fur baby!

Marci - I hope you enjoy your sons game and I hope they win too! Rest when you get home!

Candy - have a great visit with your Foster d and the new baby!

Lisa - I hope you have great weather for your week end.

I am sick. I was actually scared. Last night in bed the room was spinning around. I was so sick. I was on 3 pillows, nothing helped. I just sat in the bathroom for a while and stayed very still. I thought I would throw up too. My head still hurts and I mostly just sat quietly all morning. I dont know what is wrong but its not good for sure. I dont like these strange symptoms.

Talked to dh. Told him about the incident. OK, I actually told him I was crying, wishing he was there and I didnt want to wake the ds up and scare them etc. He too had those dizzy spells not too long ago. The dr. called about the blood tests. I need to call back. It was the nurse. She left a message that everything looks pretty good etc. So sounds good.

GTAGWTA.

 

[snappy]

This thread has really been busy lately. It is so good to see Candy and Patsmom posting again. Glad to have y'all back. sorry you are having so many complications but we are sure rooting for you!

MaryAnn, I hope you are feeling better by now. When is your DH due to return?

I am glad you at least heard something from the nurse and that it "sounded" positive. It would be nice to have more info, but on Friday afternoon, I doubt that doc will contact you. If you do hear more, please let us know.

I took off early from work today. I usually go back in after driving carpool, but the last Lenten Friday I did that, the traffic was bad and it seemed like a waste. It is only a 10 to 15 minute drive from my office to school and then to the neighborhood to drop all the girls off but all bets are off on Fridays in Lent.

Instead I ordered some boiled crawfish from my favorite close restaurant for pickup. Can you believe the parking lot was full at 4 pm (mostly the dine in crowd)?

I also picked up some already peeled crawfish from the grocery store, and all the fresh seasonings I need to make crawfish ettoufee.

If I can I may freeze some and import it to Orlando in May. Anyone adventuresome and want to try some, I will have a full kitchen at Bonnet Creek this time. Lisa? Sha?

It won't be spicy, I will pack the tobasco and it can be added to taste. It is mostly just flavorful with the garlic, onions, green onions, bell peppers and parsley.

Maryann, you and your DH need to try some. I have a reservation for a car, so I can pick you up. Maybe your first crawfish ettoufee birthday dinner!!

GAGWTA! Hope it is warming up in your neck of the woods!!!!!

 

[luvmarypoppins]

Good afternoon ladies

PatsMom - it seems like you have your medical ins./expenses stuff well organized.

All I usually do is whip out the credit card and hand it over to the billing lady. She says, didnt I just see you? Yes she did! I go to 2 surgeons in the same bldg. and she does all the billing etc. I feel like I am becoming a permanent fixture there.

Cheryl - just read about your dd's roomates and the birthday plans gone astray. I hope despite everything that happened, that she can have a happy day.

Laurie - my dh loves spicy food. Me, no way. I have to take prescription stuff for all my bad stomach problems. Sometimes that doesnt even help me.

All my baseball sistas would appreciate this. Ds23 is going to the Mets game tonight with his friends who are fans. He is wearing his Yankees shirt. I think they have bleacher seats. I hope this does not get ugly for him.

Well my new word of the day is not Charlie Sheen's WINNING...no, mine is SPINNING!! As in I went to get something out of the refrig to cook for dinner last night and I almost fell into the refrig as everything was spinning around me. Ds21 came and helped me sit in a chair. Very scary again. Then at night I just sat propped up more in the bed with one of the ds bedrest pilow things and couldnt move to the L or R or everything was spinning again.

I talked to dh. He is sleeping now and will be boarding the plane in a while. I will be SOOO happy when he is home. I am here alone right now. Normally I wont mind at all, but with the dizzy stuff, I am a little nervous. I have my cell phone in my pocket for sure. I was cooking for the church dinner tomm, so that kept me distracted.

GTAGWTA.

 

[smiley_face2]

Lisa -- congrats on your DD's job. That is terrific news!

Smiley -- do you have one more a/c? Hang in there. You are so strong -- you can do this!

And about here is where I draw a blank -- chemo brain has definitely set in.

Sometimes I just have to laugh at myself. Better than tears, which I'm prone to at night the past few nights. Last week I noticed that the only place on me growing hair is on my transplanted tissue from my DIEP flap. Where is the justice in that? It's quiet strange to see hair growing there. So I do laugh about that.

Tears come from my Arthritis flaring in a big way with taxol. I'm so thankful not to be nauseous and have tummy problems 24/7 as I did with a/c, but this is beginning to break me down too. I guess that's why my onc said she'd have to push me over the "finish line." As I know it could be so much worse I try not to complain much but it is therapeutic to talk to you gals here. (I apologize if there are guys reading along as well!)

GAGWTA to those I've forgotten again.

Oh Marci, there is nothing fair about any of this is there? I hope you have really good pain killers for your pain, but I'm really happy to read you don't have the nausea and tummy problems as with the A/C. Yes I have one more of those to go. I am dreading it so much but so very happy it's going to be over!! My dr. tried to stick me right in hospital for a couple of days when I saw her on mmmmm wed. or thurs. I honestly can not remember... bad chemo brain too.... but I promised her I would force myself to drink lot's of the meal supplement drinks and if I got worse that night I would come in so she let me come back home. Thankfully by the next day I was feeling better. She suggested I take the extra week to recuperate, but by tonight I am feeling so much better I just want to go and get it over with next week, so hopefully I can. She said the newest protocol for the taxol is to give it weekly in a reduced dose as apposed to every 2 weeks, so they want to try that with me, which means if I can get this a/c done this week coming, then a break, then the taxol once a week for 4 weeks, then the month of radiation, I could potentially be done by the end of June oh I pray all goes well from now on and this can happen. hubby and I talked today and if it goes as planned we are going to go away in August for my birthday, take another long road trip all down the coast right to DL. The coastal drive is the part I'm most excited about, that drive along Big Sur in California...I could do that forever!! There are some awesome log cabins on the beach there we never got to try and wanted to. and we want to see more of the Hearst castle, and spend at least a couple of nights in Carmel... I have not felt any kind of happiness about anything like this is so long. Marci you are my hero, and the person running the race just ahead of me looking back every now and again and saying "come on you can do it!" it is so inspiring to me it makes me cry. How many more treatments do you have?
Hello to Patsmom and Candy30, congratulations!!
Maryann...I am so very sorry you are unwell! I pray this will be resolved for you asap! I hate being so sick you are actually scared!
Cheryl I hope you are feeling better soon...
Lisa!! can I share in your excitement?? that is such awesome news!! I'm so happy for her and for you, you will be so proud when you get to see her there working!!
I have to say I have not had to pay for any of my prescriptions, because our government medical pays for it all. I get the reciepts to see though, each round of the neupogen (neulesta) injections I get are over $2500. if we had to pay that ourselves, well we couldn't. The chemo drugs the nurse was telling me, each batch they mix up for me is over $5000. there is never any question about getting MRI's or cat scans or muga heart scans or anything, I just get told I need one, and get called with an appointment time. The government even pays my travel expenses into the city for my appointments because we have to travel by ferry. We've had the same family doctor for over 30 years now, and he has his little black book of the top specialists for whatever comes up that he sends us to. On the flip side, we do pay a lot more in income taxes which is mostly to cover our universal medical system. Our gas is way more expensive, and our liquour costs more than double because the other half goes into taxes. Hubby does have an extended medical coverage through his employer that covers things like private hospital rooms as apposed to being in a shared room, orthodics,the user fees for massage therapy, physiotherapy, etc. our government introduced user fees of $25-35 per session on those types of things a few years ago... and of course dental. I am very grateful to not have to worry about money at a time like this.

 

[marcij]

Lisa- I am going to try the biotene when I am in treatment. The sonic toothbrush is going to have to be a present for me. I hope this weekend gives you good weather to sit out by the pool again.

Marcij- I hope you are feeling better. Enjoy your DS baseball game! Don't feel guilty. He knows and that makes your being there all the more special!

LMP PNM- I hope you all are feeling well. Enjoy your weekend. LMP I cracked up at your son's boot sound! Hilarious!!

I am going to visit my DFoster daughter. I don't know if you all remember me talking about her. She just gave birth to a baby girls 4 weeks ago! She is beautiful! So I am a Foster Nana. She is having a hard time because her fiance was shot by a man over road rage a week after the baby was born. So we have been trying to help as much as we can. He has a long way for recovery. I will post pictures when I remember how.

Have a good weekend! GTAGWTA

Candy -- you are right! He did appreciate seeing me there. He had a huge smile on his face. I'm glad I stayed in Dallas.

Its sad to see how almost all of us have to fight with our insurance companies for the follow up stuff. Bladder cancer has a terrible recurrence rate - anything below Stage 2 is pretty treatable but it often recurs. And if it is high grade cancer like mine is, you have got to be vigilant! So in my medical budget I now have to include 3 month cystoscopies for the next several years, then reducing in frequency after that. But it will be at least once a year for the rest of my life. And then at various intervals I will have to have maintenance treatments, for as long as I can stand them or until I have another recurrence and they remove my bladder.

All of this is expensive! I have read of several who have no insurance or bad insurance who do not do the follow up treatment. So the recurrence isn't caught until they have symptoms. And by then it is sometimes too late - it is muscle invasive (stage 2). At that point, it is radical cystectomy, lots of chemo, and a not very good survival rate. I have some pretty high co-pays and deductibles so I am trying to set money aside regularly to keep up with the surveillance.

Because I am going to keep kicking this cancer in the butt! Just like you ladies are doing with your cancers.

Hi Patsmom. About insurance -- in yesterday's mail I got a bill where my ENT had billed insurance for 2000 for five minutes of a scope in my sinuses a couple of weeks ago. This was in his office, all he used was numbing spray which he does each time he goes in my nose anyway, and now I have a bill for coinsurance. Jeesh. At least I do have insurance but this is really ridiculous. I'm glad you are being proactive about setting money aside. It's rotten we have to worry about money and about how to be our own advocates against the insurance companies.

Good afternoon ladies

Linda - loved your dog pictures and Happy B day to your fur baby!

Marci - I hope you enjoy your sons game and I hope they win too! Rest when you get home!

Candy - have a great visit with your Foster d and the new baby!

Lisa - I hope you have great weather for your week end.

I am sick. I was actually scared. Last night in bed the room was spinning around. I was so sick. I was on 3 pillows, nothing helped. I just sat in the bathroom for a while and stayed very still. I thought I would throw up too. My head still hurts and I mostly just sat quietly all morning. I dont know what is wrong but its not good for sure. I dont like these strange symptoms.

Talked to dh. Told him about the incident. OK, I actually told him I was crying, wishing he was there and I didnt want to wake the ds up and scare them etc. He too had those dizzy spells not too long ago. The dr. called about the blood tests. I need to call back. It was the nurse. She left a message that everything looks pretty good etc. So sounds good.

GTAGWTA.

I'm so sorry you are going through this. That is very scary. I hope you are feeling better. I saw your question on the Grand Floridian thread. I normally have the caesar salad at Gasparilla's and my DH has a sandwhich. Both are light and are pretty good for counter service. I have not had food or drinks out by the pool so I can't help with that. And yes, if you don't like the first room you can ask if there are other options. The first time we went to the GF my bell boy took one look at our room, and without me even asking called the front desk and asked for something different. Sometimes they can accommodate and sometimes they can't, but it can't hurt to ask.

This thread has really been busy lately. It is so good to see Candy and Patsmom posting again. Glad to have y'all back. sorry you are having so many complications but we are sure rooting for you!

MaryAnn, I hope you are feeling better by now. When is your DH due to return?

I am glad you at least heard something from the nurse and that it "sounded" positive. It would be nice to have more info, but on Friday afternoon, I doubt that doc will contact you. If you do hear more, please let us know.

I took off early from work today. I usually go back in after driving carpool, but the last Lenten Friday I did that, the traffic was bad and it seemed like a waste. It is only a 10 to 15 minute drive from my office to school and then to the neighborhood to drop all the girls off but all bets are off on Fridays in Lent.

Instead I ordered some boiled crawfish from my favorite close restaurant for pickup. Can you believe the parking lot was full at 4 pm (mostly the dine in crowd)?

I also picked up some already peeled crawfish from the grocery store, and all the fresh seasonings I need to make crawfish ettoufee.

If I can I may freeze some and import it to Orlando in May. Anyone adventuresome and want to try some, I will have a full kitchen at Bonnet Creek this time. Lisa? Sha?

It won't be spicy, I will pack the tobasco and it can be added to taste. It is mostly just flavorful with the garlic, onions, green onions, bell peppers and parsley.

Maryann, you and your DH need to try some. I have a reservation for a car, so I can pick you up. Maybe your first crawfish ettoufee birthday dinner!!

GAGWTA! Hope it is warming up in your neck of the woods!!!!!

I would try it. My stomach is almost to the point that I can have spicy again. I can't wait to eat Mexican food again. I hope yáll have a fantastic trip. You both deserve a wonderful getaway.

Good afternoon ladies

PatsMom - it seems like you have your medical ins./expenses stuff well organized.

All I usually do is whip out the credit card and hand it over to the billing lady. She says, didnt I just see you? Yes she did! I go to 2 surgeons in the same bldg. and she does all the billing etc. I feel like I am becoming a permanent fixture there.

Cheryl - just read about your dd's roomates and the birthday plans gone astray. I hope despite everything that happened, that she can have a happy day.

Laurie - my dh loves spicy food. Me, no way. I have to take prescription stuff for all my bad stomach problems. Sometimes that doesnt even help me.

All my baseball sistas would appreciate this. Ds23 is going to the Mets game tonight with his friends who are fans. He is wearing his Yankees shirt. I think they have bleacher seats. I hope this does not get ugly for him.

Well my new word of the day is not Charlie Sheen's WINNING...no, mine is SPINNING!! As in I went to get something out of the refrig to cook for dinner last night and I almost fell into the refrig as everything was spinning around me. Ds21 came and helped me sit in a chair. Very scary again. Then at night I just sat propped up more in the bed with one of the ds bedrest pilow things and couldnt move to the L or R or everything was spinning again.

I talked to dh. He is sleeping now and will be boarding the plane in a while. I will be SOOO happy when he is home. I am here alone right now. Normally I wont mind at all, but with the dizzy stuff, I am a little nervous. I have my cell phone in my pocket for sure. I was cooking for the church dinner tomm, so that kept me distracted.

GTAGWTA.

I hope your DS made it out with no scars! That would be like showing up for a Ranger game in the bleacher seats with THAT team's jersey...

Oh Marci, there is nothing fair about any of this is there? I hope you have really good pain killers for your pain, but I'm really happy to read you don't have the nausea and tummy problems as with the A/C. Yes I have one more of those to go. I am dreading it so much but so very happy it's going to be over!! My dr. tried to stick me right in hospital for a couple of days when I saw her on mmmmm wed. or thurs. I honestly can not remember... bad chemo brain too.... but I promised her I would force myself to drink lot's of the meal supplement drinks and if I got worse that night I would come in so she let me come back home. Thankfully by the next day I was feeling better. She suggested I take the extra week to recuperate, but by tonight I am feeling so much better I just want to go and get it over with next week, so hopefully I can. She said the newest protocol for the taxol is to give it weekly in a reduced dose as apposed to every 2 weeks, so they want to try that with me, which means if I can get this a/c done this week coming, then a break, then the taxol once a week for 4 weeks, then the month of radiation, I could potentially be done by the end of June oh I pray all goes well from now on and this can happen. hubby and I talked today and if it goes as planned we are going to go away in August for my birthday, take another long road trip all down the coast right to DL. The coastal drive is the part I'm most excited about, that drive along Big Sur in California...I could do that forever!! There are some awesome log cabins on the beach there we never got to try and wanted to. and we want to see more of the Hearst castle, and spend at least a couple of nights in Carmel... I have not felt any kind of happiness about anything like this is so long. Marci you are my hero, and the person running the race just ahead of me looking back every now and again and saying "come on you can do it!" it is so inspiring to me it makes me cry. How many more treatments do you have?
Hello to Patsmom and Candy30, congratulations!!
Maryann...I am so very sorry you are unwell! I pray this will be resolved for you asap! I hate being so sick you are actually scared!
Cheryl I hope you are feeling better soon...
Lisa!! can I share in your excitement?? that is such awesome news!! I'm so happy for her and for you, you will be so proud when you get to see her there working!!
I have to say I have not had to pay for any of my prescriptions, because our government medical pays for it all. I get the reciepts to see though, each round of the neupogen (neulesta) injections I get are over $2500. if we had to pay that ourselves, well we couldn't. The chemo drugs the nurse was telling me, each batch they mix up for me is over $5000. there is never any question about getting MRI's or cat scans or muga heart scans or anything, I just get told I need one, and get called with an appointment time. The government even pays my travel expenses into the city for my appointments because we have to travel by ferry. We've had the same family doctor for over 30 years now, and he has his little black book of the top specialists for whatever comes up that he sends us to. On the flip side, we do pay a lot more in income taxes which is mostly to cover our universal medical system. Our gas is way more expensive, and our liquour costs more than double because the other half goes into taxes. Hubby does have an extended medical coverage through his employer that covers things like private hospital rooms as apposed to being in a shared room, orthodics,the user fees for massage therapy, physiotherapy, etc. our government introduced user fees of $25-35 per session on those types of things a few years ago... and of course dental. I am very grateful to not have to worry about money at a time like this.

I keep saying this, but this thread is an incredible support group and I feel so very lucky to have found it. I'm so grateful to Elizabeth for encouraging me. We are supporting each other and fighting our cancer the best way we know how. The ones that took this journey before us have been so helpful in sharing their experiences and giving of themselves. It feels good to be able to post my experience and hope that I can return the favors of those that have been so helpful to me, paying it forward.

You amaze me with your strength and you have been an inspiration to me. I hope you are still feeling ok and can get the last a/c behind you. I think the new protocol with Taxol does help some based on the info I was graciously given on here about experiences with the old protocol, and my opinion is you'll hopefully be through with it before some of the worst side effects have time to compound and catch up with you. Then on to radiation which I have no experience with but I know these fine ladies will help guide you through.

I think the birthday trip sounds perfect. My June trip has certainly given me happy anticipation and something special to look forward to. I have six finished of the Taxol, six more to go. While the number six has never seemed like a big number in real life, in this particular circumstance it seems giant. My joints are howling already.

 

[Candy30]

Marcyj- I am glad you got to make it to his game! That big smile made it all worthwhile. But you knew that already! Hang in there. Here's to Six and being half way there!!

Smiley-I hope you are feeling well enough to keep on your treatment schedule. That is nice you have a trip planned. I think that helps when you have something to look forward to.

Lisa- I hope you had a good weekend and you are feeling ok.

Patsmom- I try to stay on top of insurance. There are some days where I am a fighter about it and others where I can't stand looking at another bill. I am going to try and sign up this year for Flexible spending account. They take money out of your pay to help with copays and so forth. See if that helps any.

PNM- Hope you are feeling ok.

LMP- I hope you are feeling better. Please Be Careful. Glad you got some good news on the bloodwork. What do they say to you about the spinning? Isn't there anything they can do for it? Your DS is daring. When I lived in Cleveland, I wouldn't dare wear a Steeler Jersey at a game. At different homes and parties but not at a game! LOL Hope he comes out unscathed!

Snappy!!! How are you doing? I really missed you guys. But I didn't realize how much until I got back on here! Hey is there anyway you can ship your dish to Pittsburgh!!!

So my DFosterD and my grandbaby are great! She is so beautiful. Sweet and weighs 10lbs now. I feel so bad for the two of them. Her Fiance's job denied workman's comp and he can't collect unemployment because he can't work. So they are strugglingl DFD was laid off the month before the baby was born. The man that shot him is out on bail! They had a fender bender when he was going out to get lunch on his break. This guy waited for him at his job parking lot and shot him 3 times in front of police headquarters! I just don't know about this justice system. They didn't even charge him with attempted murder because he shot him below the waistline. He has a hip replacement. The main bone in his thigh (femer) broken with rods in it. He is walking wit a walker now. Its hard for him too.

But I enjoyed my baby. DFD and fiance let me pick out the middle name and i was happy. I picked Skye. Fits her too.

I can't remember how to load pictures! Can anyone give me a refresher?

So my DS schooling is going well. He got a job at the Humane Society about 4 months ago! Which is great with one problem. He wants to bring home every dog! We have a shepherd and husky mix. I just love him!!! We got Koha a day after we put our cat of 15 years down and it also was the day I had treatment. He laid at the bottom of my bed all day that day. It was awesome to see how sweet he was and he had only been there one day. He wanted to bring home a Mastef (sp), Bernard, boxer, anohter husky, and pit puppy! We can't do another dog. Koha is big enough!