Dis Breast Cancer Survivors Part III - GAGWTA!

[PatsMom]

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!!!!!

When in May are you going to be there? I'll be at the Beach Club from May 21 to May 28. My husband's birthday trip. Timed so I'll be in between treatment cycles and not in the bathroom every five minutes hopefully!

LMP - have you heard anything about the spinning? That is really scary, especially with your DH away from home.

I can relate to not wanting to deal with the insurance crap. I hate doing it. But I've got a daughter in college that we are trying to pay for so every penny helps. I know we could skip our vacations, which are our only real extravagance, but its kind of my husband's bucket list item that we'll spend that much time together and the only way to get me to stop working is to get me away from home! His health is not good. He retired eight years ago because the doctor's told him he'd be lucky if his heart lasted another few years! So far he is hanging in there but we do treasure our time - even more now that I am dealing with the cancer.

Hope everyone's tests and treatments go as well as can be expected! I was thinking about doing the Susan G. Komen 3 Day for the Cure walk again this year but have decided not to since I couldn't train much this month because of the treatments and if all goes according to plan, the Boston walk will be right aftr a round of maintenance treatments. In addition to the bladder problems, the BCG treatments screw up my blood sugar something awful so the endurance walk just isn't a good idea this year. I really enjoyed it last year even if I was walking against medical advice because of severe anemia from my bleeding tumor! I am helping with the fund raising for my old team though so I do still feel like I am doing something. I really wish bladder cancer had some well organized fund raising events like this. BC treatments have come so far since the disease started getting so much attention and money thrown at research.

 

[luvmarypoppins]

Good afternoon ladies

Linda - I was watching your Red Sox blast my Yankees last night

Cheryl - I hope you are recovering from the flu and that you will be able to do the chemo on schedule. Thinking of you sista, hang in there.

Lisa - did you get to enjoy time by the pool? Has Meg gotten any more info about the job?

Smiley - that trip sounds wounderful. My dh loves driving the ds along the coast. They told me they stopped at the famous Alices Diner last time. I am sure it will be such good therapy for you! I think I would love to see the surf and the sea lions. etc.

Candy - so sorry that your fdd and her bf have to deal with all of these problems. Do they have some kind of victims board/compensation fund like they do in NYC? I love that name - Skye! So beautiful!!

Marci - you are doing a great job. with eveything! Are you gong to Disney in June? Will you be going the same time as Elizabeth? Hang in there. Insted of trip countdown tickers, maybe everyone could get a treatment countdown ticker. When it is 0 that would be so neat!!

Laurie - I read the Jazz festivals are soon by you. I am sure you are going to some?

PatsMom - we will be at the Beach Club too. May 23-26. We will have to have a big ole meet up. Laurie, Lisa, Cheryl, Sha etc. Who will be there?
I will hae to drag dh out of Storm Along Bay.

Well dh is home and he took me to the ENT surgeon. The lymph node is good. He looked in my ear. I told him about the dizziness. It is getting better He said to keep things slow. So now I have an appt. with the ear specialist and a hearing test sometime in May. I guess its a good idea since I only have 1 ear and he says he wants to keep my 1 ear good and I havent had a hearing test in a really long time. I guess I forgot how many I had when I was growing up. I guess after a while I forgot I was only born with 1 ear. He thinks one of those little things dislodged in my ear etc affecting the balance.

Every time I go there its more $$ and another visit etc. Gheesh. I did see the dr. who saved my life. We always smile at each other. He knows what I mean. Yes, she is saying - thank you for saving my life. I asked my surgeon and said "Oh I got an invite to the little talk you are giving etc., so what is the new reserach etc. He comments to me "Oh nothing much, just new ways how to skin cats?. WTH. The more I have to see and talk to this guy, the less I like him, Gosh, you think after almost killing me he would be a heck of a lot nicer.

Then I proceed to tell my favorite np how ds19 is coming to the univ. in the fall and wants to do the nursing program. She then proceeds to tell dh and I how she thinks its unfair as the male nurses get promoted to managerial type posiitions after they get in and she has to wait forever etc. I said well my ds wants to be a hands on person, not management etc. I told dh I went out of there feeling like she hated men and my ds too. What is wrong with this.

I have a meeting tomm. at 3 . I hope the school will hang on. We need a miracle from God for sure. Dh has a meeting at night and then one tonight. He is forgoing the one tonight as he says he never sees me, oh and he is heading back to China in 25 days., sigh, sigh. I think I might try to squeeze another 2 days out of him for the FL trip. I will look at prices etc.

GTAGWTA.

 

[PatsMom]

Count me in for any meet up! I'll be travelling with my husband, daughter, and a good friend of my daughters. They may not be interested in meeting up with a bunch of ladies who have helped to support me on the internet but I definitely am!

 

[snappy]

Count me in for any meet up! I'll be travelling with my husband, daughter, and a good friend of my daughters. They may not be interested in meeting up with a bunch of ladies who have helped to support me on the internet but I definitely am!

Just a quick post via my iPhone but I know I would love meeting you Patsmom. I will be at hilton bonnet creek May 19 for 3 nights and then at wyndham bonnet creek for 5 nights. I will pm you my cell phone number.

Lmp, glad the dizziness is better. Jazz fest is coming up but DH is not impressed with the lineup this year. I don't go without him.
,

 

[smiley_face2]

I have a dilema.... I have been given my "get out of jail free" card so to speak, having delay of a week before my last A/C treatment to heal up a bit more. I was and am feeling much better, but still have some side effects that involve my gastro intestinal system and also some bleeding from mucos membrane areas. Part of me wants to take the week to heal, but then, I will get my chemo on the 20th, right before Easter weekend, which will put me right out of the picture. Of course this is the first Easter without our son, we have always spent our Easters together as a family, and helped with taking the 4 girls to the egg hunts etc. It is also our oldest grand daughters 7th birthday on Good Friday. So part of me wants to just push ahead and get the chemo this week, and hopefully not suffer too much more, so that I can be well enough to do at least some of our family things, and help with the girls, but I just don't know. Hubby says I need to put myself first and take the other right out of the equation, heal up some more before I compound my problems. Of course I feel that delaying the treatment is shifting the numbers against me instead of for me as well. Just don't know what to do, any suggestions or thoughts will be greatly appreciated.
It's funny after my last post, I had been feeling so positive and happy, then had a big crash and spent the whole weekend crying constantly. Grief is a nasty creature.

 

[Candy30]

Hi Smiley,

I saw your post and wanted to respond. I know this may not be what you want to hear but I would opt to wait and get better. Thinking even if you push through and get the chemo and you are not feeling great. You still may be under the weather around the time for you GD Birthday.

I read I think on one post where a Mom couldn't get in to town for her Daughter's graduation and she was sooooooooo upset and sad. A suggestion a poster made was to go the following week and plan a couple of days of activities. Spa day, hair day, go shopping and hang out with her. I know it's not the same if you are not there on that day but it still can be special on another day.

I wish I could be there to meet you all. That would be sooooo cooool!!!

The Mom later posted that her daughter said it was the best time she ever had and wanted to do it yearly with her. Just think, its awful when you are feeling semi well. Think of how it maybe when your are kinda sick.

Be careful.

I wish I could meet all of you in May!!!

 

[wdw4us2]

MaryAnn - Thanks for asking about Meg's job status. She was fingerprinted last Friday and has her orientation at MK this Saturday. She has to be there at 7:30 a.m. She is hoping to start working sometime after May 2nd, which is when she has her last final. Glad the dizziness is subsiding a bit.

Candy - Sounds like you really had a good time with DFD and her baby. It's nice that you're still there for her.

smiley - I agree with others who have said you need to rest up, based on my own experience. You can't force your treatment to fit your needs, you have to listen to your body.

Laurie, PatsMom & MaryAnn - If I'm up to it, I would definitely like to meet up with all of you during your WDW trip. I'm also anxious to see DD while she's working in Frontierland!

I've had a busy few days. I felt so good on Friday that I did finally go in the pool for the first time in five weeks. I did 30 slow laps and felt really good. I paid for it the past few days, though. Zero energy, but no pain.

I had lots of visitors over the weekend. Both of my brothers came by to see me as well as two of DDs friends who were home for the weekend. Also, my computer techno geek friend and his wife came by because DS let another virus into the family computer. This is the third time he has killed our computer, so I told DH to make him chip in $50 toward the purchase of a new tower. Expensive lesson - hopefully he has learned something from this.

Went in for my labs today. RBC still low, so I had another Prokrit shot. I ran into my oncologist on the elevator on the way out. She has not been able to reach my Gyn/Onc at UM yet, so she spoke to someone she knows at another cancer center. I am hoping my hematocrit numbers have come down or I may have to be admitted to the hospital on Friday for my chemo. Something about me needing to have a lot more hydration over a longer period of time to be able to handle the infusion. We'll see.

 

[snappy]

Lisa, glad you were able to swim in your pool again. That really is awesome.

It must be real if your daughter has been fingerprinted and all.

It would be wonderful to get together with you too, Lisa. We will have to figure out the best spot. I am flexible.

I will pm y'all my cell number.

Smilie, I would side with Candy's advice. It sounds like your medical advice is to give it some time. I would go with that.

It it were your daughter or granddaughter going through treatment, that is what you would want for her.

This is a short term thing. I like Candy's idea of doing some special later. Make a new tradition that is special to you and her.

I am in denial that Easter is in less than 2 weeks. I have been too involved in yardwork. I do love it but my allergies have gotten away from me.

My ettoufee was not up to my usual standards so I can going to try again.

Long day in the accounting world for me today. I am still in the record reconstruction stage and I am losing my patience with it all. Too much time at the computer.

 

[PatsMom]

Well I made it through the third treatment in this cycle and am home taking it easy and hoping the side effects won't be too bad this time. Then I am on a cancer vacation I hope until June 22 when I have my next cystoscopy. Then if all still looks good, another cycle of maintenance treatments. I am pretty determined to put up with the side effects if it means that I have an increased chance of keeping my bladder.

And the timing is pretty good for my May trip - I'll be past the side effects of this cycle and pretty rested up for the next one!

 

[luvmarypoppins]

Good afternoon ladies

smiley - I too would put yourself and your health first. I like the new traditions idea too. I am sending you lots of . I saw what my mom went through when my sister died, I cant imagine how hard it must be for you. My thoughts and prayers are with you sista

Candy - the new ent dr on the team here is supposedly from univ. of pitts.

Lisa - glad you got to enjoy the pool. Its only in the low 50's here with rain around the corner, cloudy etc. I cant wait to get to Florida! I hope your treatment goes as good as can be expected on friday

Pats mom - hope you recover quickly from the treatment.

Well I should be at my school meeting right now, but ds is trying to straighten out his class schedule. I said , its o.k. as school comes first. I was a little disappointed as I like to be around some adults and it stinks not having a car etc.

I called back the gp nurse. She said all my blood tests were fine, but the gp wants me to still do the monthly b12 shots so it maintains a good level and does not go down etc.

And since we were on the discussion about med. ins. stuff. I got the bill yest for the surgeon just having an office visit and the biopsy. It was like $600., I only had to pay $30. Havent gotten the actual biopsy bill yet.

I talked to dh yest. I told him I dont want to go back to the reg.ent surgeon again in June just to check my lymph node. He was so condesending to me with his answer yest, I just dont want to deal with him. Dh said, fine with him, so I will cancel that visit when I see the stomach surgeon the lst week of May.

Still dont know if I am going to be having the cancer testing in May. I heard they have a shortage of the med for the injections I need., so we will see.

Also talked to dh about adding 2 days to our trip. So I think we will maybe look at the 26 and 27 since dh is bringing back some guys from China with him to have meetings I think right before we leave.

Also I read that for ds19 only 10% of the people that apply get accepted into the nursing program at the state univ. Oh gheesh. We will really have to pray for that one.

GTAGWTA.

 

[wdw4us2]

My oncologist called me today. She still hasn't heard from the gyn/onc at UM so she talked to a doctor at Moffett Cancer Center in Tampa. I have to have two separate infusions this week. I am having the Taxol on Thursday over a three hour period. I then have to go back on Friday for an eight hour infusion of Carboplatin. She said this was called desensitization - lots of fluids in between each bag of taxol. She originally thought I would have to be admitted to the hospital for this because it would take 12 hours. When she recalculated it, turns out it would "only" take eight hours so I can do it at her office instead. I also made the mistake of asking her if this would be the last one and she said I would probably need to have an eighth round of chemo.

It's going to be a long two days. . .

 

[snappy]

Oh, Lisa, hang in there honey. This will be a rough week. I know you must feel overwhelmed. Feel those feelings. But also think about how you got in that pool this last time and swam 30 laps. Heck, I sure could not do that, and I am not in treatment.

You continue to be an inspiration, despite diagnosis after diagnosis. I want to congratulate you in person for your strength.

Patsmom, rest up after your treatment. Hopefully this one won't be as tough.

Sorry you are stuck at home, LMP. You can talk to us, but I can't promise to always act like an adult. You too are like the energizer bunny, maintaining your sense of humor and caring for others even while not feeling well.

I hope you do add on two days. I am staying until the 27th. I just booked a vanfrom National-plenty of room to pick you up with a wheelchair if need be.

I still have not gotten a commitment from my mom. I thin keight nights is too long for her. My DH offered to bring her to the airport later if she wants.

I brought DD15 in to get her driver's permit today and we celebrated afterwards at her favorite sushi place. The weather is nice and they have a great deck to eat outside, so we did. Since I left work early I also fit in walking our two dogs before dark. I feel like I accomplished stuff today.

Small victories.

 

[Candy30]

LMP- I hope the new Doctor represents!!! You amaze me with the energy and stamina you have. Shows you have a big heart with lots of room for others

Lisa- OMG Girl! You hang in there and I know you can because you always have spunk. I am like Snappy. I can't swim those laps on a good day! I'll be praying that those hours go fast.

When I used to have Rutxin, it would take 8 hours! I would take portable DVD player and watch movies and that would help the time pass some.

Patsmom- Glad you are through with your treatment. Rest up and get better.

Snappy- Yeah! for your daughter getting her permit. My son is 19 and he still hasn't gotten his license. No drive or desire, because he can get places by buses. I hope that your Mom feels up to going with you on your trip. Does she use a wheelchair when she is there? My Mom loved the scooter. Do you think she might like that? Yeah for small vicotries It's nice when you feel like you accomplished something.

PNM-Can you give me tudoring session on how to upload pictures? I forget how.

So I am not feeling well but since I had surgery, I used all of my time. So I definitely can't miss anymore days. I am a chaperone at my daughter's 8th grade trip and I need two days for that. It's hard working at a hospital because there are always germs floating everywhere.

I go to see my hematologist tomorrow and just remembered to get bloodwork done.

Yeah I figured it out! How to load Pictures. Here is my Grandbaby girl. Isn't she pretty. I know I am biased.
http://i732.photobucket.com/albums/ww329/anlynmack/kaierasheadshot.jpg

One with her Dad. Doesn't she look like she just posed for the picture?

http://i732.photobucket.com/albums/ww329/anlynmack/perfectmatch.jpg

one with my DD

http://s732.photobucket.com/albums/ww329/anlynmack/?action=view&current=101_0135.jpg

I guess I didn't figure it out afterall.

 

[luvmarypoppins]

Good afternoon ladies

Candy - hope your visit goes well at the dr. today. The pictures of the baby and your family are beautiful. Now we can see why you are so proud!

Lisa - Praying that your treatment will go well tomm. Hang in there! You are doing an amazingly awesome job sista!

Cheryl - how are you? I hope you are getting your strength back from the flu despite the chemo treatments. Thinking of you

Laurie - Congrats on your dd's permit. Wow I guess in other parts of the country they get them young. Not the case here in NY for sure. And I heard they just made some new tougher rules here too.

Linda - sorry you are having all those phone problems with that business. I am sure it is frustrating.

smiley and marci - thinking of you both and hoping your treatments are bearable. Hang in there ladies!

Ds23 is off to Boston tonight. Dh told me there is a co. in Japan doing some work for him and his new boss maybe wants him to go there to check on it I told him, I thought you got that memo that said no travel allowed etc. I am not happy about this for sure.

I talked to dh about the other 2 days. He seems agreeable. So I am looking at the Yacht Club. We will just have to move over from the Beach Club and we can get a balcony. It will be the passholder rate, so that will save some $$. I have a big "honey do" list for dh for the week end. We shall see how that turns out.

GTAGWTA.

 

[CherylDan]

Hello ladies....I'm trying to follow along, sending out good thoughts to everybody in treatment, and everybody else too.

I'm starting to get some of my strength back, even managed to do a little light cleaning today for the first time in a month. This last 3 weeks of chemo did not go well....I've had fairly constant bad stomach pain and a bloody nose, a headache that will not go away, and just so tired. Also seemed to have lost my sense of smell and taste, although it is very slowly somewhat starting to come back....pretty sure I still couldn't identify anything in a blind taste test. Ugh. This was my week off treatment, and I am starting to feel better. The thought of starting over again next Tuesday with another round of three more weeks is not very appealing. And the thought that this treatment is go on "indifinately" is starting to feel very overwhelming. I had a CT scan on Monday, should find out next Tuesday about how/if treatment is working. Hate to sound so negative, I'm just not in a very good place right now.

In better news, DH has been working away on our kitchen...I just sit and cheer him on. LOL. The granite is in, and the backsplash is done. Still have a few things to get finished, but it is already looking so much better. And heck, maybe someday I might even feel like cooking something other than frozen pizza. I'll post some pictures maybe this weekend.

GAGWTA.....thinking of you all.

 

[MerryPoppins]

Sorry to be MIA. Just busy with wedding plans. I'll do better.

 

[wdw4us2]

Well, I managed to make it through the Thursday and Friday chemo. The Taxol on Thursday took almost four hours. Boring, but manageable. Friday was another story. The desensitization process was a little different than I had expected. Five bags over nine hours not including the premeds. I made it almost the whole way through with no problems until right near the end. Started feeling itchy hands when there was about an eighth of an inch left in the bag. Had to stop, have more benadryl and a solymedrol shot. Waited half an hour and finished the rest. Felt okay, but pretty much crashed this morning after my Neulasta shot. Have been sleeping off and on all day. Depressed thinking about how many more of these I will have to endure. They should never tell you what number of treatments you're going to have - it's too depressing when they add more on.

On a positive note, DD had her Disney Traditions class today. She received her nametag and is definitely assigned to Splash Mountain. She had a great time and is thoroughly enjoying the entire experience. I'm so happy for her!

Hope everyone else is coping with their various maladies better than I am. Blessing to everyone.

 

[NHAnn]

Hi all!! I have been an absent GAGWTA girl for sure....but you all have been on my mind in and my thoughts and prayers.

Just very very busy at work and way more extra hours than I want, and it's invading my thoughts at night as a result, soI'm tired and distracted.

I do read to catch up every few days! Having trouble posting, hope this works!!

Those of you in treatment, keep up the strong fight!

Some exciting news, my grandson Avery, the leukemia survivor, has been invited to the WHITE HOUSE for the 2011 Easter Egg Roll on Monday!! He and his mom will attend! We're all so excited for him/them!

GAGWTA!!

 

[NHAnn]

feast or famine........

 

[luvmarypoppins]

Good evening ladies

Cheryl - so sorry you are dealing with all those chemo side effects. I am sure it is so much to deal with. Keep hanging in there sista! Sounds like your kitchen is doing great! I am sure it is a great project for you to keep your eyes on.

Lisa - so glad you made it through your long and hard treatments too. You and Cheryl are such an inspiration to everyone here for sure. I wish I could riDe Splash Mountain, but after all my surgeries I dont want to chance it.

Melissa - I am sure you are so looking forward to the wedding. Did you have the tornadoes and severe weather by you. Hope all is well.

Ann - good to see you posting. I am sure its hard when our minds even take the work home with us. Hmm, maybe you can be like Laurie and get a massage. Are you going to your fishing retreat this year?

GTAGWTA.