Dis Breast Cancer Survivors Part IV - GAGWTA

[Sha]

I signed my cousin up for the walk in October. She cant get to NOLA but she can sleep in for the cure. I paid for her registration. She is the daughter of my cousin (still, a cousin <3) and her grandmother is a reason I walk. Aunt K was probably the first person I ever knew to have breast cancer, but never knew until years later when I could understand it. My cousin L is in her early 20s so I dont mind helping her out. I told her to hit her 3 uncles up, and her dad. LOL

Hope everyone is having a good day today or as best as possible.

Lisa sending hugs and love!!!

 

[Pea-n-Me]

Just curious on everyone else's reaction to this thread: http://www.disboards.com/showthread.php?t=2933031

I responded on that thread and I'll repeat it here.

"Let he who is without sin cast the first stone."

 

[Dancind]

Hi everyone, not doing so good today. Got the path report, the surgeon took 16 nodes, not the 2 he told us. So I was off to PT and the therapist thought I had an infection. So got some penicillin and a day later it is getting worse. So back to the doctor tomorrow. Somehow I dont think this is going to be any fun.

 

[smiley_face2]

Hi everyone, not doing so good today. Got the path report, the surgeon took 16 nodes, not the 2 he told us. So I was off to PT and the therapist thought I had an infection. So got some penicillin and a day later it is getting worse. So back to the doctor tomorrow. Somehow I dont think this is going to be any fun.

sorry you are not feeling well. Physiotherapy helped me so much!! It was actually nice to lay there for an hour every couple of days with the lymphdema sleeve on my arm pumping away doing it's job. I fell asleep nearly every time! No fun is not in this equation at all I'm afraid

 

[minijeanie]

Hi everyone, not doing so good today. Got the path report, the surgeon took 16 nodes, not the 2 he told us. So I was off to PT and the therapist thought I had an infection. So got some penicillin and a day later it is getting worse. So back to the doctor tomorrow. Somehow I dont think this is going to be any fun.

Ouch! Try to stay positive..
I also had alot of nodes taken out. 29 nodes to be exact. When I asked why so many, I was told they take it in a cluster and that is how many I had in the cluster.

Positive and good thoughts going your way. Keep us updated

 

[snappy]

Cheryl, hope your trip is going well. It sounds like a wonderful experience. Thanks for sharing it with us.

Dancind, has the infection cleared? I too had 16 nodes removed. I have not had an infection in eight years but do have slight edema on the affected side, not really noticeable. I hope you are not in too much pain.

We returned from Orlando Thursday evening. It was a lovely trip. It was extremely crazy just before we headed down since DH moved DD22's belongings to our house from NOLA, and her BF came too along with the minature dauchshund they adopted. When DH was done with that, he worked to the last minute. Despite the pandemonium we managed to have a nice visit with DD22 and her BF. DS23 was also in town so we had a couple of great meals together.

We left at 4 am for our 10 day trip. DD16 brought along a wonderful friend, the 2 girls were a joy. They did their own thing most of the time but were very good about checking in with us and we ate many meals together. DH even fit in two days with the girls at Universal, and with the disney parks open late they still went to a Disney park on the universal days. I loved it as I had me time. Loved the boardwalk as usual, and the Wyndham bonnet creek presidential was unbelievable.

I took far too many photos. I got brave this go round and used the manual camera settings. I had to delete and adjust and click some more. I thoroughy enjoyed taking photos. Also, having my iPad allowed me to view and send some good photos to my sister, brother, and mom.

The 6 year old daughter of my brother's long term co worker was recently at Sloan Kettering with a large tumor. It turned out benign but so large and affecting her spine and lungs so she will undergo a series of operations over the years. Her family is going to disney and universal in a few days as a reward for her for being so brave during the ordeal. I had fun putting together a box with her favorite stuffed animals, chip and dale, a lanyard, pins, park maps, etc. They will be at the Swan, so I took many photos of the Epcot area and forwarded them.

DD22 and her BF left for NJ while we were away. It was hard for me, knowing we won't see her for awhile, but I know she is having an adventure. We are in touch alot with texting.

I was blessed to get to spend time with Elizabeth Monday at AK and Tuesday night at EPCOT. Her son and DD16 and her friend rode mission space together and had a blast while the adults visited.

So much fun!

Back to the real world. Will try to post some photos at some point. Right now I am overwhelmed with it as I have so much in photo stream it is unmanageable.

Have to get back to it.

Thinking of you who have recently had surgery.

GAGWTA!!!

 

[Pea-n-Me]

Great mini trip report, Laurie! I feel like that with my pictures, too, most of the time!

 

[snappy]

Thanks, Linda! I am one to go on and on usually. I was so happy DH was able to go with us. We drove, and it is a 700 mile journey. I could have done the drive alone but it would have drained me. I did it last year at Mardi Gras but we stopped overnight coming and going. DH literally did not know if he could make it until the day before we left. He had his laptop with him and worked a bit the first few days. Work requirements were not overwhelming and besides we had 10 nights, we never woke up early or left for the parks early. We tended more to do the extra magic hours. Also, MK was open til midnight most nights.

I thanked DH many times for giving me the iPad. It came in handy graduation weekend but especially this trip. My BIL told me to get the camera card adaptor that plugs into the iPad from the Apple store. It worked like a charm.

My family loved seeing my pictures.

The wifi was very spotty at the boardwalk. I talked to other guests and apparently it was an issue throughout the resorts.

If disney sends me a survey I will comment on the wifi.

At the Wyndham the wifi was awesome. I enjoyed the lazy river immensely. It did rain a good bit Tuesday and Wednesday, but we made the most of it. DH and the girls rode even the forbidden journey Harry Potter ride with little wait. He sprang for the VIP express pass so they had unlimited front of the line access to
every other ride. IT was pricey but they had a real blast. DD 16 did lose her iPhone the second time she rode Rock it so that was bad, but we already have replaced it. Universal did find it, the front glass is cracked but they are shipping it to us. I am hoping we will be able to retrieve her pictures from the trip. I will go visit my one to one friends for help.

I managed to cull through my pictures over the last 2 days. I have about 800 keepers. I think I am about done enhancing them. I need to make an album.

When I can get on my computer I will try and post a few pictures here.

 

[Dancind]

That sounds like such a fun trip! DD and I stayed one night at Universal's Royal Pacific one for a couple of nights on our last trip and that was so much fun! It's pretty easy to see everything in a couple of days when you can get to Harry Potter early and have FOTL for everything else.

Roller coasters and cel phones, not a good combo. Bet that was a good story at the Apple store, though. Those kids have heard it all.

I am doing better, taking two antibiotics. Being very good about taking them and NOT drinking any wine since this scared me. Looks better, at least the angry redness is gone. I still have a hole at the very end of my incision though, not sure that should be there after three weeks.

 

[smiley_face2]

So much fun being had by so many of us!! can't wait to see some pictures!!!
Dancind I am really glad you are feeling better I am having a bad few days, a LOT of pain. stomache is bothering me badly feeling bloated and sick, and my esophagus is spasming so badly all through my back and chest into my neck, bad enough it makes me throw up. Been taking dilaudid the last 2 days which is helping, but wears off so quickly. only ever had to take it for more than just one day one time before, dont' know what is going on. Sure hope it clears up because we leave in exactly 4 weeks!! I will see the dr again before I go but whatever it is....can wait till I am home from our trip!!!
We have changed the end of our trip though....instead of going Vegas, we decided to save that for when it's just us, we are going to move from our hotel across the street from DL to The Disneyland Hotel! very exciting but will cost us 3 times as much! best rate I can get even with my annual pass is $463. a night with tax. the renovation looks amazing as does the new swimming pools so we decided to stay there and relax by the pool rather than drive to Vegas to do that! With little Jacob with us we thought there would not really be much to do there other than pool time, there is only so much time a 3 year old can spend shopping and looking at fancy hotels
Hope everyone has something to smile about today

 

[luvmarypoppins]

Diana - sorry to hear your are dealing with the ifnection. I hope the antibiotics are working on clearnng it up. I had a post op infection and that was from my bowel resection surgery. Went on for months. I think last year I had the infected lymph node. I was miserable, swollen and itchy. It was above my surgical site of the cancer surgery. Its not fun. Hang in there! Stay out of the soon too.

Laurie - sounds like you and your family had an amazing trip. I would love to see some pictures too. Sorry about your dd's i phone. I love the boardwalk area too. That was sweet you got that little package for that little girl. Of course I like to hear the food report too!

smiley - I saw some ptures of the new cars land. I am sure Jacob is going to just love it for sure. I am sure you willl have a great time at the resort. Its good to spend time at them especially when you spend so much on the room. I tell that to ds too.

minniejeannie - are you a trip planner too? Like having a park schedule and adrs? I am obsessive about that.

Cheryl - sounds like you are having an awesome trip too

Lisa - how are you feeling sista. Hugs and prayers to you as always

Sha - how are your birthday plans shaping up?

Pats Mom - when is your check up? I know soon. Wishing you all the best.

Alice - long time no see. I suppose you are busy with Regents and end of year stuff. I am sure you are looking forward to your BC trip. Storm A Long Bay was awesome as usual. The main pool is so loud though!

Linda - how is baseball going? Hope you kids are well and your mom too.

I have not been feeling well on and off either. Lots of digestive issues. We shall see. I am busy trying to get my bible school stuff ready.

My voice has not been good lately either. Dont know if the warmer weather has something to do with it too. Less humidity in the air.

GAGWTA

 

[wdw4us2]

I've been enjoying reading everyone's updates. Sounds like a busy Summer already for some of you!

I had to get a unit of blood transfused again on Friday. Makes for a very long day and I'm never comfortable in the infusion center. At least they have individual TVs - good way to pass the 5 hours. Been feeling decent, but never feel good anymore unfortunately.

DH and DS are going to the Mouse House June 25-27th to celebrate DS's 18th birthday. I had to force DH to take the trip - I finally convinced him that they both needed to get away. Meg is coming home to take care of me while they're away. DS is excited because he hasn't been to WDW during the week since last Summer and he prefers the smaller crowds. They are staying at Pop and going to check out Art of Animation resort while they're there.

 

[PatsMom]

Hello ladies,

It has been so hectic around here lately. Seems like I never get on the boards. It was good to take a bit of time and catch up with everyone, both the good and the not so good.

LMP - I have my cystoscopy on Thursday morning. Hoping that they don't find anything significant and we are still good with the idea of just keeping a close watch and not doing any more treatment. The cumulative side effects are still brutal - I can't imagine having it get worse! The new wrinkle in all of this is that my anemia is getting worse. Still sporadic, but definitely not iron deficiency. I have plenty of iron, it just isn't getting used. The oncologist/hematologist calls it "anemia of chronic disease" due to signs of "inflammation" someplace in my body. I think that is a kind way of saying another form of cancer starting somewhere. Anyhow, it is time to have the bone marrow biopsy. That is scheduled for tomorrow. I am told it is quite painful so I am not looking forward to it but it has to be done!

Hope everyone is enjoying some summer weather by now. Always makes me feel a bit better when the weather is good!

 

[smiley_face2]

Hello ladies,

It has been so hectic around here lately. Seems like I never get on the boards. It was good to take a bit of time and catch up with everyone, both the good and the not so good.

LMP - I have my cystoscopy on Thursday morning. Hoping that they don't find anything significant and we are still good with the idea of just keeping a close watch and not doing any more treatment. The cumulative side effects are still brutal - I can't imagine having it get worse! The new wrinkle in all of this is that my anemia is getting worse. Still sporadic, but definitely not iron deficiency. I have plenty of iron, it just isn't getting used. The oncologist/hematologist calls it "anemia of chronic disease" due to signs of "inflammation" someplace in my body. I think that is a kind way of saying another form of cancer starting somewhere. Anyhow, it is time to have the bone marrow biopsy. That is scheduled for tomorrow. I am told it is quite painful so I am not looking forward to it but it has to be done!

Hope everyone is enjoying some summer weather by now. Always makes me feel a bit better when the weather is good!

seriously, we go through so much pain in all of this, surely for the bone marrow biopsy they can give you some very good drugs to take away the pain?! it's like when they want to do a biopsy on other parts of our bodies without anything, for goodness sake I know it's just a matter of it taking more time and costing a bit more but I decided after the last time (porta cath removal in office instead of hospital) I am refusing to endure any more pain if it is just a matter of "inconveniencing" them!! I hope you will talk to them about it, I am sure there is something they can do! ......."now this is just going to pinch a bit...." well come here and let me "pinch" you a bit!!! Lol....

 

[smiley_face2]

I've been enjoying reading everyone's updates. Sounds like a busy Summer already for some of you!

I had to get a unit of blood transfused again on Friday. Makes for a very long day and I'm never comfortable in the infusion center. At least they have individual TVs - good way to pass the 5 hours. Been feeling decent, but never feel good anymore unfortunately.

DH and DS are going to the Mouse House June 25-27th to celebrate DS's 18th birthday. I had to force DH to take the trip - I finally convinced him that they both needed to get away. Meg is coming home to take care of me while they're away. DS is excited because he hasn't been to WDW during the week since last Summer and he prefers the smaller crowds. They are staying at Pop and going to check out Art of Animation resort while they're there.

Good to "see" you Lisa! I am glad you are not suffering like you were before, but I so wish you could be going on the Disney trip It will be nice to have some time with your daughter though.

 

[minijeanie]

. Its minniejeannie - are you a trip planner too? Like having a park schedule and adrs? I am obsessive about that.

Ha! You know me well.. I plan everything. In fact each year myself and 6 good friends take a trip together. I plan it all. I decide where we go and do itineriaries, collect monies. etc. We all met when our kids were going to elementary school. Once our kids got older we didn't see each other as much so we created a group and meet once a week to catch up on our lives. It has been a wonderful experience for me. 6 years ago we decided to do a overnight trip. We went to NYC for the first four years. We took a limo in and stayed an ate at the best places. Then we upped the ante and went to Mexico, Jamaica and this year Punta Cana... I am really excited. For me, I could not live without these women. They have helped me through the worst times of my life. I remember one day when I came home from the hospital after an infection during chemo and all my friends and their hubbies were taking down my wallpaper in the dining room and hallways and were painting for me. It was incredible. Wow I blabbed about them didn't I....

 

[minijeanie]

I've been enjoying reading everyone's updates. Sounds like a busy Summer already for some of you!

I had to get a unit of blood transfused again on Friday. Makes for a very long day and I'm never comfortable in the infusion center. At least they have individual TVs - good way to pass the 5 hours. Been feeling decent, but never feel good anymore unfortunately.

DH and DS are going to the Mouse House June 25-27th to celebrate DS's 18th birthday. I had to force DH to take the trip - I finally convinced him that they both needed to get away. Meg is coming home to take care of me while they're away. DS is excited because he hasn't been to WDW during the week since last Summer and he prefers the smaller crowds. They are staying at Pop and going to check out Art of Animation resort while they're there.

Good Vibes coming your way..That is so unselfish of you to want your family to take a trip. I commend you. Can't wait to hear what they have to say about AOA. It looks really really nice. Hope you are feeling better

 

[NHAnn]

Hi ladies!
Time gets away from me but wanted to say hello....thinking of you all every day, even when not posting I hold you all close in my heart!

Been having a rough patch with Avery recently...but the power of prayer and good vibes and the strength of the most determined 10 year old on earth is quite amazing. Sunday afternoon, still in PICU, the doctors were saying how fortunate it was that they started the antibiotic that they chose on Wednesday, because the bacterial infection strain (definitively identified on Sunday) can be lethal They weren't committing to any release date even within the next week at that point. However, Avery was just not going to miss the WWE Smackdown (wrestling ) at Manchester NH tonight...he was released from the hospital this morning and he and his daddy made it to the show tonight, even getting to meet one of the wrestlers before the show He has a "backpack" portable IV thing on him, and visiting nurses come tomorrow to get the latest short term routine into place. Amazing is an understatement....

My work is busy this time of year, all that is going OK...either that or I am just not caring that much anymore as I get older about the trivial office nonsense.

Snappy, I bought the iPad camera adapter thingie...worked fine for me at WDW in April. I have an issue though that my Macbook doesn't have the OS version to support the iCloud automatic pushing/syncing from Cloud to both devices lap...and I can't remember my apple admin password (which is apparently different than my apple ID)and haven't had the time or inclination to "reinstall the media disk" or whatever it's talking about in order to reset the password and then buy and put in that OS upgrade. So I just plug along, I really just wanted the ability to have the pictures on vaca on something other than just the camera card, so the adapter works for now.

While at the Swan, the Wifi was bad there too. Eventually found that if I sat on the floor near the doorway to the hall at night I could get a strong/long enough signal to check e-mail and such. Was rather annoying, the wired connection has been fine there int he past-but didn't want to drag the laptop when I have the iPad now...was told by the desk to contact IT services to "troubleshoot" the weak wifi but I never got around to doing that, we just weren't in the room enough to be bothered.

PatsMom, I am thinking of you this week.......

AliceCC, so good to "see" you!!

and always thinking of you ALL in treatment

GAGWTA!!

 

[luvmarypoppins]

PatsMom - Thinking of you and hope the bone marrow test was bearable. I agree with smiley. They were thinking of giving me that test too. I said I want to be out, not know anything etc. or at least not feel it. Hope you are resting up and healing from the procedure. Also wishing you all the best tomm. at your appt. You sure are going through alot lately. Blessings to you.

Anne - good to see you posting. Avery is always in my prayers. He is such a fighter and trooper for sure. Sorry to hear that Avery is having a rough go of things. I hear you about the infection. Sadly a boy from here did pass away from that as they didnt catch it in time. They said it only took 24 hours etc. Wishing him all the best.

Interesting to know about the Swan. Dh and I were considering there for the Food and Wine. We have stayed there before but didnt think about the wi-fi etc.

Lisa - That was so sweet that you wanted your dh and ds to have guy time. I know that is why my dh takes the ds on trips too etc. I am sure you will enjoy your time with Meg. She is such a sweetheart.

Well ds24 said something really unkind to me about the cancer. I had dh have a little talk with him. I told him to make sure he reminded him of when he saw me in the coma and almost dying etc. Maybe that will keep him thinking with his heart instead of his mouth etc.

Today I have a new appreciation for teachers. Been working on my bible school stuff most of the afternoon and that was just printing out papers I need etc. Its alot of work, but I enjoy doing it.

Ds20 has applied for a scholarship. He called and they said they are still reviewing the applications. We shall see. I hope he is not disappointed as usual. He does try so hard to apply for stuff. Would be a blessing if he actually got one.

GAGWTA. Thinking of you all . Blessings always.

 

[minijeanie]

[Well ds24 said something really unkind to me about the cancer. I had dh have a little talk with him. I told him to make sure he reminded him of when he saw me in the coma and almost dying etc. Maybe that will keep him thinking with his heart instead of his mouth etc.

I can relate to this as well. My DS21 was not so kind to me when I was going thru chemo. I think they are angered that we are not well. I had never been sick a day in my life prior to diagnosis. No hospital stays, no long flus..etc. I think he could not cope with me being in bed a few days a month. I had hoped my kids and I could go for counseling because they suffered alot in past few years. MY DH passed away in 6 weeks, my DD had a baby when she was only 19. and 3 months later I was diagnosed. Was such a whilrwind...

I call them my dark days (lol) but now in two months I am trying a healing process by going to WDW with my kids.. I am not taking my grandaughter as she is only two. I want this to be a trip for us. My DS is in Army Reserves and being deployed to Afghanistan in October. I am happy he is leaving me knowing that I am well. Guess this hit a cord with me.. Sorry so lengthy