Dis Breast Cancer Survivors Part II -GAGWTA!

[jackskellingtonsgirl]

Maureen, I am so very sorry for your loss. I am happy to see you posting here again. I have been thinking about you. Congrats on nearing completion of your radiation!

Dawn, I am hoping for the best for you with the new chemo! I know everyone is different, but I am paying VERY close attention to everyone's chemo experiences.

 

[NHAnn]

aarrghhh...another long post lost!!

Maureen-my heart aches for you. You have been through so much in recent months, please know that we are here for you. You have a lot to grieve for, not only your mom but the loss of your own pervious version of good health. Know that we are holding you close in our hearts.

Laurie- DSis and I have booked air for RFTC!! We arrive 10/3 and depart 10/7!

I wanted to post this picture of my grandson Avery,many of you know he has been battling leukemia since Thanksgiving 2006. He has another 18 months or so to go. This pic is him battling Darth Vader at the "Jedi Training Academy" at the STar Wars weekend early June on his Make A Wish trip.
I was teary through that, the symbolism of him fighting Darth was too much for me, but an inspiration I wanted to share, and maythe Force be with you all too!!

And here are my two (no make that 3 ) UNH Wildcats at DD's grad last month. She is getting settled at her summer job in Vermont at a camp for kids with Asperger's and other nonverbal learning disabilites. She sounds good when I have talked to her, the past week has been all staff trainign and bonding, their first set of campers arrive Tuesday. This job will give her a chance to decide if she wants to work with kids with her degree in Communications Sciences.

I have been thinking of you all, even when I am not posting I check in often to read....lots going on here lately and please know that I am thinking of each and every one of you, daily!!

GAGWTA!!!!

 

[snappy]

Great to see you post Ann, sorry you lost your long post (especially one with pictures!!!)

What a special trip for Avery and all your family. Glad he was up to going and you were able to join in for a few days.

Tha picture of him with the sword was very touching. I have always noticed and admired the beautiful shape of that little guy's head. That picture, even though you see only the side of his sweet face, makes my point.

I can see why the Darth Vader moment had you in tears. Love may the force be with you idea.

Another great picture of you DH and daughter at graduation. She is so lovely, and I really love what she is doing this summer. We could use her down here where I work. Our assistive technology specialist works with kids with all kinds of issues, not just physical access limitations. She did some wonderful work one year with horse therapy. She said it was very physically demanding on her but she loved it. As you can tell I think this gal walks on water. What she does is so important compared to my paltrey accounting stuff.

I am thrilled you and your sister are going for RFTC. I am not sure who else is going. I think Sha is a definite, not sure about anyone else. (Laura will be there earlier and miss it). Have you made your resort reservation yet?

DH and I are there from Sept 30 to Oct 6. He was going to meet me there earlier over the prior weekend but decided to just go on the days I booked early in the year. I still may try and go earlier if I can get away. He really needs a little time off. This trip should be more relaxing, no driving for him and NO TEENS!!! I see a lot of fall trips for the two of us in the future, even if we are not celebrating a milestone anniversary. DD12 is covered between the mom of her friend who we took with us on our trip in May and my mom.

First time the two of us have been alone together in almost 20 years by ourselves for more than 1 night. He is interested in the food and wine festival, I just want to be in WDW.

Sad news last night, a prominent mom in our grammer school and parish was killed Wednesday on the interstate going to the beach on the coast when a trailer being pulled by another vehicle across the interstate came loose and smashed into her car. Her kids were riding in another car. It was truly a tragic accident, so needless. I really did not know her except to say hi, but her oldest was in the same class as DD19 so I think we will go to the funeral Saturday, at least DS and I.

Swim team practice carpool beckons. Later. . .

 

[Pea-n-Me]

Maureen there are really no words, just know you're in my thoughts and prayers.

Ann, amazing picture, had tears streaming down my face looking at the little guy.

Laurie, what a tragedy.

Laura, will read through your TR this weekend.

GAGWTA

 

[MerryPoppins]

No real time to respond to everything, but Avery's picture made me cry.

I finally got my new "Betty" today. Found a little shop that deals with my insurance coverage. Love the lady that runs it. She's a hoot. Has two precious dogs that work with her. One is Lily, a pup that was going to be put down because she was considered un-adoptable because she has a deformed leg. I thought you might like to hear about her. Her little leg is twisted and has two paws. But she is full of life and spirit. The owner of the shop said that many cancer survivors come through her shop and many have just had surgery. Some are feeling pretty low and uncomfortable in their new skin. Many are feeling sad and low. But Lily makes friends with everyone who comes in and soon they see that even though she may not be just like every other dog out there...she's pretty darn special. She said Lily does her own little bit of therapy with her patients. I loved that!

Oh and she said my old Betty could just go in the trash. She said that is the accepted method of disposal. So I guess she knows.

Tomorrow is wash and pack day. We're doing a quick family getaway while DS is home on his week off from camp. I may have time to check in? Otherwise I'll be back sometime the middle of the week.

 

[Pea-n-Me]

I finally got my new "Betty" today. Found a little shop that deals with my insurance coverage. Love the lady that runs it. She's a hoot. Has two precious dogs that work with her. One is Lily, a pup that was going to be put down because she was considered un-adoptable because she has a deformed leg. I thought you might like to hear about her. Her little leg is twisted and has two paws. But she is full of life and spirit. The owner of the shop said that many cancer survivors come through her shop and many have just had surgery. Some are feeling pretty low and uncomfortable in their new skin. Many are feeling sad and low. But Lily makes friends with everyone who comes in and soon they see that even though she may not be just like every other dog out there...she's pretty darn special. She said Lily does her own little bit of therapy with her patients. I loved that!

Love it! That is just great, Merry! Have a nice time away.

Laura, great report! We know it makes you happy! I love that your daughter snuck you a postcard!!

 

[snappy]

Loved hearing about Lily. This story TOO touched me to tears. Especially the way you told Lily's story and related it to survivors not feeling comfortable in their skin after surgery. I sure can relate to that.

Have a great trip!!

I am off on Thursday for Texas with mom, my sister and her DH, with my brother Tom coming in from NYC. Can't wait to see Tom and my Texas relatives (we were in Mesquite last summer to for a 50th wedding anniversary celebration for my dad's remaining brother).

Love being able to get away.

 

[jackskellingtonsgirl]

Loved hearing about Lily. This story TOO touched me to tears. Especially the way you told Lily's story and related it to survivors not feeling comfortable in their skin after surgery. I sure can relate to that.

Have a great trip!!

I am off on Thursday for Texas with mom, my sister and her DH, with my brother Tom coming in from NYC. Can't wait to see Tom and my Texas relatives (we were in Mesquite last summer to for a 50th wedding anniversary celebration for my dad's remaining brother).

Love being able to get away.

We have friends in Mesquite. (That's also where I bought my car. Huge Nissan dealership over there. )
Enjoy your time with your family!

Laura - I am enjoying your trip report!

Ann - I am so glad Avery had a good trip!

Merry - Have fun on your trip!

I talked to my mom yesterday. She went to see the OB/GYN because they wanted to culture some of the fluid from her uterus. She is still not feeling very well, but I think (and the OB/GYN agrees) that her issues now are side effects from the antibiotics. Hopefully once she is finished with them she will bounce back. That will give her 2 weeks to feel good before she meets with the oncologist to get going with chemo.
We are supposed to leave for WDW in 34 days, but I am so worried about her having an adverse reaction to the chemo that I am finding it hard to be excited about the trip.

 

[Sha]

No real time to respond to everything, but Avery's picture made me cry.

I finally got my new "Betty" today. Found a little shop that deals with my insurance coverage. Love the lady that runs it. She's a hoot. Has two precious dogs that work with her. One is Lily, a pup that was going to be put down because she was considered un-adoptable because she has a deformed leg. I thought you might like to hear about her. Her little leg is twisted and has two paws. But she is full of life and spirit. The owner of the shop said that many cancer survivors come through her shop and many have just had surgery. Some are feeling pretty low and uncomfortable in their new skin. Many are feeling sad and low. But Lily makes friends with everyone who comes in and soon they see that even though she may not be just like every other dog out there...she's pretty darn special. She said Lily does her own little bit of therapy with her patients. I loved that!

Oh and she said my old Betty could just go in the trash. She said that is the accepted method of disposal. So I guess she knows.

Tomorrow is wash and pack day. We're doing a quick family getaway while DS is home on his week off from camp. I may have time to check in? Otherwise I'll be back sometime the middle of the week.

Glad to hear you found a new "Betty" (still love that) and LOVE the Lily story! Animals are good therapy for things like that etc. Met the new cat at the Vet office (where George had had some surgery) when I went to visit the boarded cats. He is going to be good for those who are waiting out in the lobby.

Completely OFF TOPIC but have you all heard AC is closing???

 

[snappy]

We have friends in Mesquite. (That's also where I bought my car. Huge Nissan dealership over there. )
Enjoy your time with your family!

Laura - I am enjoying your trip report!

Ann - I am so glad Avery had a good trip!

Merry - Have fun on your trip!

I talked to my mom yesterday. She went to see the OB/GYN because they wanted to culture some of the fluid from her uterus. She is still not feeling very well, but I think (and the OB/GYN agrees) that her issues now are side effects from the antibiotics. Hopefully once she is finished with them she will bounce back. That will give her 2 weeks to feel good before she meets with the oncologist to get going with chemo.
We are supposed to leave for WDW in 34 days, but I am so worried about her having an adverse reaction to the chemo that I am finding it hard to be excited about the trip.

Cool!! I lived in Mesquite for a couple of years in the early 60's. changed a lot since then. It was a VERY small town. We were there when JFK was killed, in fact my dad was in downtown Dallas just a few blocks away. It was a very sad day at school that day (I think I was in the 5th grade.)

We have visited there many times over the years as my grandparents were fromt here and retired there. Not as many relatives left there no but I still have 3 cousins, 2 aunts and one uncle.

Love that Mesquite BBQ!

Try and not feel guilty about looking forward to your trip. Be exited if you can and try and compartmentalize your worries about mom. You did and continue to do lots for your mom when she needed/needs you to. Your family needs you as well and vacations are important in making family memories (believe me I know).

 

[jackskellingtonsgirl]

Cool!! I lived in Mesquite for a couple of years in the early 60's. changed a lot since then. It was a VERY small town. We were there when JFK was killed, in fact my dad was in downtown Dallas just a few blocks away. It was a very sad day at school that day (I think I was in the 5th grade.)

We have visited there many times over the years as my grandparents were fromt here and retired there. Not as many relatives left there no but I still have 3 cousins, 2 aunts and one uncle.

Love that Mesquite BBQ!

Try and not feel guilty about looking forward to your trip. Be exited if you can and try and compartmentalize your worries about mom. You did and continue to do lots for your mom when she needed/needs you to. Your family needs you as well and vacations are important in making family memories (believe me I know).

I worked at the mall in Mesquite when DH and I were first married. That was in 1992. DH may be working in the Mesquite area in the future - they bid on territories and he won Mesquite, but right now he is doing something else so not sure when he will switch.

Yes, that sensation of being pulled in half is problematic! Mom has her stuff going on, but I can't just abandon DS & DH. It really is pretty straightforward - if Mom needs me to leave WDW, I will leave. I just hate being in limbo. And of course once we get to WDW I will be in limbo the whole 16 days, never knowing if I will need to leave the next day. Ugh!

 

[NHAnn]

Where'd you all go? GAGWTA!!

Happy July....we have been having Florida-like weather for a week or so, (well not quite as hot, but with heavy thunderstorms late afternoon and evenings!)

jsg-antibiotics sure can have some pretty miserable side effects. I hope your mom bounces back quickly and tolerates the chemo well.

Merry Poppins....I remember the story of Betty Boo b -- from my first days on this thread, it always made me smile. I was so sad to learn of Original Betty's demise and it seems so inappropriate to just throw her/it the trash!! I hope you had some sort of ceremony LOL

snappy, we'll be at the Dolphin, right across the bridge from the BW!!

 

[snappy]

snappy, we'll be at the Dolphin, right across the bridge from the BW!!

I suspected as much. How cool, we will be neighbors!!

 

[Sha]

Laurie, how was the 50th Celebration for your Aunt and Uncle? It is nice to get away... am itching for a WDW trip this weekend, but not sure if that will happen.

 

[snappy]

Laurie, how was the 50th Celebration for your Aunt and Uncle? It is nice to get away... am itching for a WDW trip this weekend, but not sure if that will happen.

Actually, that party was LAST July. It was wonderful. Neither my dad nor his other brother made to their 50th. We did a lot of reminiscing about dad, his brother, my grandparents, and my cousin who died from the complications of AIDS.

This year we are just going for an impromptu family reunion. I so need to figure out what to pack, I have been so focused on DD12 and packing her trunk for camp.

Sha, thanks for sending the postcard from your Germany trip. What a sweetie you are.

 

[Sha]

Actually, that party was LAST July. It was wonderful. Neither my dad or his other brother made to their 50th. We did a lot of reminiscing about dad, his brother, my grandparents, and my cousin who died from the complications of AIDS.

This year we are just going for an impromptu family reunion. I so need to figure out what to pack, I have been so focused on DD12 and packing her trunk for camp.

Sha, thanks for sending the postcard from your Germany trip. What a sweetie you are.

I totally misread that (as you know!)

glad you got it! I dont remember which one I sent you if it was the first place we were at or the second. Miss Germany... miss WDW too though its been over a month!

 

[snappy]

IYes, that sensation of being pulled in half is problematic! Mom has her stuff going on, but I can't just abandon DS & DH. It really is pretty straightforward - if Mom needs me to leave WDW, I will leave. I just hate being in limbo. And of course once we get to WDW I will be in limbo the whole 16 days, never knowing if I will need to leave the next day. Ugh!

How is mom doing?

 

[DeeCeeSW]

GAGWTA!!! Hope you are all enjoying your summer and are feeling well. DS started day camp yesterday and he loves it. Having the few hours alone each day to veg is priceless, particularly when dealing with chemo side effects.

Wanted to update you all. My MUGA score was 61, so I was cleared for Adriamycin and Cytoxan. Had my first dense dose AC tx today (1 down, 2 to go). It took 2 sticks for the nurses to find an acceptable vein (since I'm the gal who refuses a port). All went well. I was pleased to discover that the infusion itself took about a 1/3 of the time that it did when I was given Taxotere. I was given Cytoxan right after and I was done with everything in about 2 hours (this included pre-med IV).

Started feeling mildly nauseous despite having the Emend about 3 hours after the infusion. I took a Zofran, as recommended by the nurses. Feeling better now and will take another Zofran before bed. I have been drinking water like a fiend for the past 48 hours. I was told that my urine would be red/pink for at least a day, but it stopped after my third trip to the bathroom today. I think I am drinking so much water that I must have flushed it out already!

Hoping tomorrow is nausea and side effect-free. Taking an acid controller and stool softener every night, it helps! Neulasta shot tomorrow afternoon.

Hope everyone is doing well!

Dawn

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

How is mom doing?

Thanks for asking. She is trudging along! Still fatigued, and having trouble concentrating. Of course whenever she feels just a little bit better she immediately goes way overboard and ends up feeling horrible again. She finished the Levaquin yesterday so maybe that will help. She goes back to the surgeon tomorrow, and back to the OB/GYN next week.

I hope you enjoy your impromptu reunion! Pack your sunscreen - it wasn't that hot today so we were in the pool for awhile. I don't look pink but I feel kind of crispy!

Dawn - I hope you aren't too queasy from the new chemo! Hopefully this treatment regimen will go well and you can be done with it soon!

I hope everyone has fun plans for the 4th! DH has to work the 4th and EARLY in the morning on the 5th so we don't have any plans. We'll just have to wait until next month and see fireworks at WDW!

 

[havinfun]

Based on what I told you, is it at all possible that the cause of this reaction was due to the nurse not putting the catheter in properly? As I mentioned, it was doomed from the start. First my hand became swollen after she put it in--she noticed it herself, questioned it, but all she did was put a hot pack on it. Then the pre-chemo meds did not drip properly and she came back and had me reposition my hand--then the meds moved quickly. Then as I got up to go to the bathroom before the chemo meds were administered, all of a sudden there was blood in the tubing. She flushed it and then before the chemo meds, said "maybe I should take this out and find another spot, but I really don't think that's a good idea because you have good flow here, see (as she flushed with more saline and showed me movement). And then she added, "and you're not easy." I took that as her meaning it would be hard to find a new good vein so I said just keep it in. Is it possible that she essentially "missed the vein" and that once the Taxotere was administered, I had a reaction because the med was not going directly into my veins? Someone I know is suggesting this theory and thinks that I am not allergic to the drug as I was perfectly fine the first time I had it and had no side effects in the following weeks from it.

I obviously cannot go around the office and make accusations about this nurse and her ability to do her job properly without any logical hard evidence to back it up.

All I know is that I am now going to be switching to a med I do not want to take, but I have no other realistic options. On top of that I may be forced to get a PICC line if the nurses are not capable of taking me through 3 more treatments with the one good hand I have.

Any thoughts on this?

I am probably responding to this too late, but I thought I would answer your question. The IV could have been in the vein. Sometimes it get moved when you move and then the hand or arm needs to be repositoned. Sometimes it moves out of the vein. So I wouldn't think it was the nurse's fault. I am just glad that they caught your allergic reation quickly.

If you need the port put in, it's not that bad. At first mine felt really weird, but now I don't even notice it. I did have 4 rounds of AC followed by 12 weekly rounds of Taxol and Herceptin, then 13 rounds every 3 weeks of Herceptin. So that's why I was greatful for my port. If you only need chemo for the AC, then you are done, I can understand why you don't want a port.

Good luck with your treatment.