Dis Breast Cancer Survivors Part III - GAGWTA!

[luvmarypoppins]

Good afternoon ladies

smiley - hope you are healing.

Lisa - hope your infusion goes well.

Sha - enjoy every minute of your week end. Cant wait to hear all about it.

Laurie - guess we are getting the rain you and Lisa are having over the week end too.

Candy - have a great week end in Baltimore. You are a trooper!!

I am tired again. I think the endo might have to up the meds after the blood test. I dont like feeling like this. Its like I want to take a nap right now and I just woke up. Also my stomach is huring on and off. Scary. I dont know if its the same problem I had last year before I exploded with the seroma. We shall see. I cant put my finger on whats wrong or how to describe it. Hopefully its just the mesh and scar tissue moving around.

Week end plans are to do some shopping. Dh suitcase handle broke, so he needs a new one. I want to see the movie Contagion. Sounds strange though. I know dh wont like it oh well. We shall see.

Hope everyone has a great week end GTAGWTA.

 

[Sha]

We are in Kadani and I will check into that. Not sure if we will do lunch there though. I couldn't sleep anymore. May try again. Room is a hit though. Was afraid Lee was going to delay their flight but it was all good. K. did really well. Told him I would by him a Pluto (or dog... or whatever) since he doesnt have his pillow pet. Talk to you all later.

 

[wdw4us2]

Sha - Enjoy your weekend. Make sure you stop by Splash Mountain so you can say hi to Meg!

MaryAnn - I hope your stomach pain eases up. That's never any fun. I can relate to the not having energy thing. My transfusion helped with that somewhat.

Laurie - Thinking of you and hoping you don't get hammered with rain from Lee.

Candy - Good luck with the family visit. You know what they say - you can pick your friends, but you can't pick your family.

My positive attitude has really been taking a hit lately. Between needing the transfusion, not having enough energy to even get out of my own way and now my visit with the oncologist yesterday - I have about had enough of all this. She isn't happy with my tumor marker numbers after four rounds of chemo, so yesterday she informed me she wanted to add Taxol along with the Gemzar. I was not at all happy as I was just getting used to having some hair back and now it's going to be gone for the third time. The Taxol is also harsher than the Gemzar and since I have chemo every other Friday, there's almost no recovery time. After over two years of dealing with this, I am sick and tired of cancer running my life and being a part of everything I do. Right now, I'm just hoping I have the energy to enjoy our WDW trip next weekend. Thankfully, the pin event is two days of the trip and indoors so I won't need too much energy for that. I'm just looking forward to getting away from here and not having to deal with any medical appointments for a few days.

 

[Pea-n-Me]

Lisa

 

[PatsMom]

Good morning ladies! I am thinking of all of you.

LMP - hope they get your meds right. Being tired all the time really sucks. I hate my treatment cycles because they make me so tired!

Smiley - hang in there. Hope the news gets better.

We are picking up from Irene. The devastation around my area is incredible. I am so lucky that I had driveway and road damage. Some of my neighbors are literally shovelling mud from their houses. And trying to get them livable by winter. The governor has requested a disaster declaration so that it may be possible for individuals to get help from FEMA. But FEMA is saying they have no money because of the all the natural disasters this year and they will be giving the state aid but the individuals will probably be out of luck.

Flood insurance does not cover the land under your house. If the land is gone, you only get compensated for the structure. One of my neighbors who's house floated down the river shared that information with me yesterday. They have put a footbridge across Route 302 so that a child living in Hart's Location can get to school. Her parents drive her to the bridge and the school bus picks her up on the other side. Route 302 will be closed for a couple of weeks. I am supposed to have lunch with a fellow bladder cancer survivor next Saturday. Normally I drive to her town since its a pretty drive but this time she is going to have to pick me up at Harts Location. I'll leave my car by the side of the road!

Might be a good thing I am distracted trying to help neighbors. My check up is the 15th of September and I start getting twitchy a few weeks ahead. If I get good news - no sign of cancer - I get three more rounds of treatments. So about six weeks of feeling lousy. But then I get a Disney trip at the end of October! If I get bad news, it is more surgery and back to the beginning of the treatments so I would have six rounds.

The Forest Service has closed the road just past my driveway and they say it is probably permanent. Not sure how the town is going to plow up to my drive this winter - I am going to have to raise a concern at the next selectman's meeting. My brother is here with his four wheeler and we are going to try to get up the road to see what the river looks like now. It has completely changed course in a few places.

Off to get ready to face the day. GAGWTA!

 

[snappy]

Lida, I am sorry your chemo is being expanded to include the Taxol. When will the first does with Taxol be? If you pace yourself I hope you can still enjoy the trip. I know it is good to have something you enjoy to focus on. And you are right being away from appointments and treatments will be a welcome diversion.

I hope you can build up towards the end of the week.

MaryAnn, even with an increase in Synthroid , it will take a few days for you to feel the benefits. I understand that feeling when the meds need to be titrated, I have been there myself.

Patsmom, your area really go pounded. I think you dodged a bullet with the mud, even thought the dirve way is $$.

It sounds like it will be a long time before things are back to normal.

I knew FEMA was running low but I thought they were requesting an infusion of funds. I don't understand how they can't help the people with that much damage that insurance won't cover.

My good friend did get a loan for a very low interest rate and a long payback period from the SBA. I wonder if that is still available?

Linda, how is your area? Did you get power back?

We had a lot of rain and some wind this morning. The power went out briefly, maybe 30 minutes. Now the sun is shining but water is standing everywhere.

Good day to stay home and watch movies!

Except if your name is Sha and you are in WDW!

 

[smiley_face2]

I wanted to respond to this the other day but it was too difficult to type out on a phone. For years I've studied near death experiences - people who've died and come back to tell about it. One of the most fascinating things, to me, that many have reported, is that they were "out of their bodies" immediately upon the incident and usually reported feeling little to no pain. Most could see what was happening but didn't even realize they were looking at themselves. They became disinterested with what they were seeing and moved on to other, better things. This has been reported not only consistently, but for centuries and universally in all cultures, learned from drawings and writings of people who lived in ancient societies. I read one book (which was a Godwink to me, also, since I was sort of "led" to this book when I was in a store right after my BIL died suddenly and it was just what I needed to read at that time, and to share with the rest of the family, especially his wife) which was a compilation of the study of all researchers of NDEs which presented a global view on it.

Anyway, I'd like to recommend two books to you. I have given them both to my my own family members and they found them helpful. I hope you read them because I believe they'll give you lots to think about and will help you heal. It pains me to think it's hard for you to talk about this with others. So glad you can do it here.

Embraced by the Light by Betty Edie

One Last Time by John Edward

thanks for this....I have done some reading about this too, if this is the case then he went while hubby was holding his hand and talking in his ear telling him he loved him.
I'm recovering very well from the surgery, both he and the oncologist think that this was a surgical failure from the first one, and if we can get the radiation happening very soon, we have a good chance to kill this thing off! Of course life is what happens when you are busy making plans so we will see. I have a lot of fluid again, so may have to get drained next week. as of yesterday he said it is ok, not too much yet. our family doctor has been to the house 3 times since wednesday to check on how we are doing....he is an amazing person and we are so lucky to have him!!
Lisa I am so angry that you are having to go through even more crap. I am soooo praying that you will be able to have a good time in WDW!!
Candy, hang in there....and as Lisa said, but I will add to it...you get to pic your friends and your nose but not your family....
Patsmom..... praying for good results for you on the 15th!!
Maryanne.... praying for you too..... don't want anyone here to be in any pain or worry.... so many nice ladies suffering with so much, it is just not fair.

 

[luvmarypoppins]

Good evening ladies

Lisa - I know how you feel, you just want a break and to be normal. Its ok to get frustrated and say you have had enough, hmm but the coaster keeps going. I think by my operation #6 I had about enough, but knew #7 was coming. I am glad you are going away for a much needed break. Sorry about the additional chemo.

smiley - so glad to see you post. Sorry that you are dealing with the fluid buildup. I had a drain for weeks so that helped. It sounds like you have a wonderful gp. Sounds like you have a great family/personal relationship with him. That is a blessing in itself, I am sure. Hoping your healing progresses each day and you can get on to the radiation.

Laurie - hope your weather is bearable. I like your Sha comment. Too funny. Yes I agree with you, I think my meds are totally messed up right now. I am so not liking this. If I get a bad number which could indicate the cancer is back, I am going to be none too happy with the endo. I was looking at another website and all the symptoms I am having right now - joint pain, excessive tiredness and now my mood swings are all indications that the meds are off and need adjusting. I think she has gone too low. She should have really thought about this. She only has the one other patient who has this cancer and he is a guy. I feel like I am being her experiment, but what can I do??

PatsMom - yes, I am seeing some of the devestation by you on the news. So sad. It seems like you have a well thought out plan and are trying to make the best of the situation, making lemonade out of the lemons for sure!! I also know what you mean about starting to get nervous thinking about the upcoming testing. I put it out of my mind until there is another test, appt. etc. I feel like its the only way I can deal with it.

Things are not turning out as I planned this week end , oh well, such is life. One good thing, a guy who dh knows says he has a friend who might be interested in buying our property, yippee, now to just get ds cousins onboard. This guy is here donng some work so maybe dh and I could have dinner with him and his wife tomm. We shall see.

GTAGWTA.

 

[wdw4us2]

Lida, I am sorry your chemo is being expanded to include the Taxol. When will the first does with Taxol be? If you pace yourself I hope you can still enjoy the trip. I know it is good to have something you enjoy to focus on. And you are right being away from appointments and treatments will be a welcome diversion.

I hope you can build up towards the end of the week.

Laurie - The chemo I had on Friday included the Taxol. That's why I'm concerned about being up to the trip to WDW on Thursday. Feeling pretty crappy right now. I'm also concerned about when my hair is going to start coming out again. I'm hoping to make it through next weekend before that happens. The second time it fell out, it started a week after the first chemo, and I had a lot more hair then.

 

[Pea-n-Me]

Laurie - The chemo I had on Friday included the Taxol. That's why I'm concerned about being up to the trip to WDW on Thursday. Feeling pretty crappy right now. I'm also concerned about when my hair is going to start coming out again. I'm hoping to make it through next weekend before that happens. The second time it fell out, it started a week after the first chemo, and I had a lot more hair then.

Lisa, did you do taxol the first time around? It can be really hard. I was out of commission for 36 hrs beginning a few days after my first dose. I could barely even walk to the bathroom from my bedroom. Fortunately, subsequent doses were a little easier. Let us know how you're doing.

 

[smiley_face2]

Laurie - The chemo I had on Friday included the Taxol. That's why I'm concerned about being up to the trip to WDW on Thursday. Feeling pretty crappy right now. I'm also concerned about when my hair is going to start coming out again. I'm hoping to make it through next weekend before that happens. The second time it fell out, it started a week after the first chemo, and I had a lot more hair then.

I don't know why but my hair and eyelashes and eyebrows had started to grow back about halfway through my second batch of chemo, the paclitaxol. by the time I was done, I was able to wear mascara again and it looked nice, and had definition from eyebrows. the last chemo treatment hit me so hard, I was so sick with it. Then we left on our trip 4 days later. It was on the second day that I brushed my face and in the sunlight there was a little shower of hairs.... my eyelashes and brows all came out, nearly all at once!! I was so upset. I'm fortunate my hair stayed put, but it did quit growing. Just last night I could see in the mirror in right light, a fringe of eyelashes again, about 1/8 of an inch long. whew, I thought maybe they were going to be gone for good this time. Even before I noticed the lashes, a few days ago, I noticed the peachfuzz on my face.... It really made me wonder about that last chemo treatment, why it affected me so badly. I wondered if they had made a mistake and given me the old stuff again?

 

[wdw4us2]

Lisa, did you do taxol the first time around? It can be really hard. I was out of commission for 36 hrs beginning a few days after my first dose. I could barely even walk to the bathroom from my bedroom. Fortunately, subsequent doses were a little easier. Let us know how you're doing.

This is my third course of chemo. During the first course, I was on Taxotere (until I had a reaction), Carboplatin and Herceptin. During the second course of chemo (IP) I had Taxol and Carboplatin (till I had a reaction). I was then on Taxol and Cisplatin, which was discontinued because it was having an adverse effect on my kidneys. That's when I went back to the Carboplatin which was desensitized - infused over 8 hours. I would have the Taxol on the following day. During my third course of chemo, I was just having Gemzar. After four rounds of that, my oncologist was not happy with the CA-125 numbers, so she decided to add the Taxol to it. I didn't find out about this until I went for my doctor's appointment on Friday and I was already scheduled for chemo that day. I wasn't expecting to have that thrown at me that quickly and I really didn't have the option of refusing. I'm just annoyed because I've had the trip planned for over a month and based my being able to go on my reactions to the Gemzar in the following week - not with Gemzar and Taxol.

The only time I haven't been on chemo since October 2009 was when I was having a surgical procedure (I've had nine since Aug. 2009) and the recovery period. Hence my rant the other day of being tired of all of this. . .

 

[Candy30]

Lisa, LMP,Patsmom and Smiley- I am so sorry that you all are going through so much. Lisa, I didn't realize how much you have been through. I like this poem and I don't know who it is by.

In the morning with the journey all before us on the road,
It takes courage to begin, that is sure;
For the first step is the hardest, and we always think the load
May be greater than we've power to endure.
When the first mile lies behind us we can say, "Now that is done,
And the second and the third will soon be past."
So we trudge on through the noontime, and the setting of the sun
Finds us coming to our stopping-place at last.


I just think of the several first steps you all and others have taken in this journey of life and how we continue to endure. The strength is more than anything in this world. Hang in there and keep going! You all have beautiful families that love you and support you. And you have us too!!!

 

[snappy]

What a touching poem, Candy! Love it!

And I love the rest of your post too, very uplifting.

Lisa, how are you feeling today. I think not anticipating the addition of Taxol and then it coming out of the blue without time to wrap your mind around it was what made it so difficult.

I am sure that you have a good onc, but I think a little advance notice might have made the road a little smoother.

I sure hope you can still make the WDW trip, Thursday. Not sure what the weather is there, but here we have a touch of fall right now, something that came in after the tropical storm.

Smilie, thinkng of you.

MaryAnn, did you and your DH get to have dinner with the potential buyer?

I am having a good week.

Laurie

 

[wdw4us2]

Candy - Thanks for the poem and the encouraging words.

Laurie - I think you are correct about having the Taxol sprung on me with no warning.

Feeling a little better today after have IV hydration yesterday. Will hopefully be even better tomorrow after my shot so I can be on my way to WDW!

 

[Candy30]

Lisa- I hope you are feeling strong after your shot! Tell Meg we said Hello!!! Take your time in WDW and above all enjoy yourself!

Snappy- We have nothing but rain here!! The forcast is rain until next week. I hope it changes.

Sha-Hope you had a great time and can give us updates.

LMP-I was thinking about your dinner and mtg with the buyer too! Did you ever get to a movie?

Smile/Patsmom Hope you are doing well.

GTAGWTA

 

[luvmarypoppins]

Good afternoon ladies. Raining here too.

Lisa - hope the injection goes well and that you will be able to enjoy your disney trip. I know you are so looking forward to it.

Candy - Thank you for that beautiful poem. Very touching. Hope the rain is not too bad for you.

Sha - waiting to here about your trip!!

Pats Mom - thought of you when I got a brochure for Smugglers Notch for fall.

Smiley - hope you are healing. One day at a time sista

Grumpy - how are you feeling? Hope you are healing as well

Cheryl - thinking of you

Well the week end was a bust. Dh still has not found the new phone he bought, hmm $$$. Never went to the movies as I thought it was last week end and it opens this week end. Didnt go out with that guy. His friend is a builder, not a buyer. He just wants to build the houses. That wont work out.

Ds19 is working towards the nursing stuff. He says the chem class is hard and he has to go and get another tb test as his is over 3 months old. Applying to volunteer at the hospital. More $$, oh well. I am so tired. Not liking this at all. I also have to see when my last mamo was. Usually they send a card. I dont know if this place is still in business either, but they have other offices but I will switch to some place else if they are not

Saw all the talk about the Grand Floridian DVC. Wonder if I could ever talk dh into this?? He likes the Epcot area much better though.

GTAGWTA.

 

[Pea-n-Me]

Well, it has been a stressful few weeks. As often happens with the elderly who sustain injuries, things snowballed for my aunt and we had to make the difficult decision to take her off life support this week. She passed away peacefully with us at her side. We are now dealing with all the other stuff that goes along with that - funeral, legalities, cleaning out her home, etc. It's so sad.

 

[luvmarypoppins]

Linda - , so sorry to hear about the loss of your Aunt. Sending you my prayers and deepest sympathy.

 

[wdw4us2]

Linda - I'm so sorry for your loss. Prayers for you and your family.