Dis Breast Cancer Survivors Part IV - GAGWTA

[robinb]

Diana - the seafood pie sounds like something dh and I would be interested in.

Peg - how is Kendalls teaching going?

Well I have sent about 6 e mails back and forth with my cousin. Sadly I feel like he doesnt want to see us all that much. He says, oh you would never be able to keep up with my dd and her family etc. And it seems like all he wants to do is spend saturday at the pool. sigh. Well hopefully we can meet up if only for a little while. I am guessing if its around 30 minutes it will be a miracle. I feel bad for my ds. I just want them to have some sense of family etc. and this is just putting a big burst in the bubble. Oh well, I will just concentrate on our family having a good time. What is the old saying about not being able to choose your relatives.

That's a really rude thing to say. I'm kind of a commando myself but I slow down for other people.

 

[kofslinky]

I'm not sure I've ever actually posted on this thread before, as I tend to just lurk on this board, but after the past couple of days I need to talk to people who know what I'm going through.

Quick story of me- I was diagnosed with Stage IV breast cancer at age 27 (11/4/2010) and started chemo on a clinical trial at the beginning of January in 2011. I had a port put in not long after my diagnosis thanks to the tiny veins in my body.

Jump forward to 2013. I celebrated my 30th birthday this year, and my 1 year cancer free-versary was in June. Back in April I came off of my Abraxane thanks to swelling in the retinas, but I stayed on my Avastin. This past weekend I started feeling some pain near my port, but I didn't think too much of it at the time (I had an infiltration last spring, so it occasionally still hurts some). When it still hurt yesterday and OTCs and ice didn't help, I called my doctor. Went to access the port and the nurse saw what she called "yucky stuff" and thought it felt harder than usual. After about an hour, I got the privilege of an emergency port removal thanks to a nasty infection. Overnight stay in the hospital and three doses of IV antibiotics later, I am home, but now have a GIANT hole in my chest that needs to be packed until it heals. I'm sure this is going to take forever to heal, and I'm getting ready to start my 8th year of teaching next week.

I'm not used to feeling like a cancer patient- I've worked almost every day since my diagnosis (except treatment days or scan days), but I just don't know what to expect with this. Has anyone else had this happen or have any words of wisdom they can share? I'm feeling miserable and emotionally horrible, and just want to hear I'm not alone on this one.

Maybe I should start planning my next Disney trip to take my mind off of it.

Thanks in advance! And congrats to everyone who has survived so far!

 

[Feralpeg]

I'm not sure I've ever actually posted on this thread before, as I tend to just lurk on this board, but after the past couple of days I need to talk to people who know what I'm going through.

Quick story of me- I was diagnosed with Stage IV breast cancer at age 27 (11/4/2010) and started chemo on a clinical trial at the beginning of January in 2011. I had a port put in not long after my diagnosis thanks to the tiny veins in my body.

Jump forward to 2013. I celebrated my 30th birthday this year, and my 1 year cancer free-versary was in June. Back in April I came off of my Abraxane thanks to swelling in the retinas, but I stayed on my Avastin. This past weekend I started feeling some pain near my port, but I didn't think too much of it at the time (I had an infiltration last spring, so it occasionally still hurts some). When it still hurt yesterday and OTCs and ice didn't help, I called my doctor. Went to access the port and the nurse saw what she called "yucky stuff" and thought it felt harder than usual. After about an hour, I got the privilege of an emergency port removal thanks to a nasty infection. Overnight stay in the hospital and three doses of IV antibiotics later, I am home, but now have a GIANT hole in my chest that needs to be packed until it heals. I'm sure this is going to take forever to heal, and I'm getting ready to start my 8th year of teaching next week.

I'm not used to feeling like a cancer patient- I've worked almost every day since my diagnosis (except treatment days or scan days), but I just don't know what to expect with this. Has anyone else had this happen or have any words of wisdom they can share? I'm feeling miserable and emotionally horrible, and just want to hear I'm not alone on this one.

Maybe I should start planning my next Disney trip to take my mind off of it.

Thanks in advance! And congrats to everyone who has survived so far!

Sorry to hear this! Hoping that you heal quickly. Out of curiosity, have you been having the port flushed every six weeks? I just finished chemo about three weeks ago and was told that I have to have my port flushed every six weeks. I am scheduled for my first flush on Sept 9.

I am hoping that I will be able to have my port removed once I finish all my treatments. Not really wanting to keep it forever.

Kofslinky, I'll be thinking of you!

 

[kofslinky]

Sorry to hear this! Hoping that you heal quickly. Out of curiosity, have you been having the port flushed every six weeks? I just finished chemo about three weeks ago and was told that I have to have my port flushed every six weeks. I am scheduled for my first flush on Sept 9.

I am hoping that I will be able to have my port removed once I finish all my treatments. Not really wanting to keep it forever.

Kofslinky, I'll be thinking of you!

My port was still being used regularly, and had actually been used the Wednesday before it came out. I loved my port- if it wasn't so annoying I would have kept it forever (maybe the next one...).

 

[snappy]

Kofslinky, I did not have chemo so no port, but I sure hope the healing progress is fast.

Are you in much pain still?

The timing is horrible for you right here at the start of the school year.

Please let us know how you do.

I bet others will will post their experiences too.

 

[luvmarypoppins]

kofslinky - welcome. Sorry to hear you are dealing with the inf. and now the wound packing. I have a different kind of ca but I can relate to the wound packing. I had to have some more emergency surgery after my cancer surgery and my poor dh had to pack about 300 times. I counted them! I had an infection in my stomach from the post surgery stuff and it took months to heal.

I hope you will be able to feel well enough to teach. I really admire teachers. I am on the school council of my ds former school. The only thing I teach these days is vacation bible school at our church once a year.

Peg - wow that is a lot for Kendall to handle in one classroom. I assume the autistic kids have ieps to be in her class etc. I guess he is ok not to have an aide with him? I hope she gets what she needs to run her classroom soon. It sounds like trial by fire for her for sure! I dont think thats particularly fair for a new teacher. Do they have a teacher mentor program there? We are doing that at our school this year. The experienced ones have to help the younger ones etc.

What is everyone dong this week end? My friend is moving her ds out here to college. I am hoping we might be able to meet up for dinner. I dont know her plans. Sometimes she heads right up to Cape Cod for a vacation so we shall see.

Just found out my wonderful dh is going away next week to michg. for 4 days, tues - friday. His visa is suppose to come through so I guess then its off to Russia he goes the next week and then Florida and then back and the same day out to Calif. again. My head is spinning.

I told him about my cousins comments and he couldnt believe it either.. Oh well. My cousin is adamant about staying at the pool on saturday. I just think he wants to get drunk all day. Um, he is going to Hawaii like a few weeks after that so I dont think he needs the sun like he says. I am telling the ds later what he said. I want them to just be aware of the whole situation. Oh and my sweet dh says -oh if you cant keep up with them, just sit in the wheelchair and I will push you.

Laurie - you remember how dh pushed me when we were trying to rush and see Meg? Glad he did or we would have never saw her. Did you like the Butler movie? I read the book and the movie is just so different. tell me, did they show the butlers basement of his home?

Ds 2 is studying his dosage and calc. Linda can relate to that one! He is excited to be doing his new clinicals next week. Hmm. hope he doesnt run into my almost killed me surgeon

I am concerned about PatsMom. I hope she is doing ok.

GAGWTA

 

[Pea-n-Me]

I'm not sure I've ever actually posted on this thread before, as I tend to just lurk on this board, but after the past couple of days I need to talk to people who know what I'm going through.

Nope, you haven't. I would have remembered you from the Scavenger Hunt. I see the avatars my friend made in your signature.

Quick story of me- I was diagnosed with Stage IV breast cancer at age 27 (11/4/2010) and started chemo on a clinical trial at the beginning of January in 2011. I had a port put in not long after my diagnosis thanks to the tiny veins in my body.

Jump forward to 2013. I celebrated my 30th birthday this year, and my 1 year cancer free-versary was in June. Back in April I came off of my Abraxane thanks to swelling in the retinas, but I stayed on my Avastin. This past weekend I started feeling some pain near my port, but I didn't think too much of it at the time (I had an infiltration last spring, so it occasionally still hurts some). When it still hurt yesterday and OTCs and ice didn't help, I called my doctor. Went to access the port and the nurse saw what she called "yucky stuff" and thought it felt harder than usual. After about an hour, I got the privilege of an emergency port removal thanks to a nasty infection. Overnight stay in the hospital and three doses of IV antibiotics later, I am home, but now have a GIANT hole in my chest that needs to be packed until it heals. I'm sure this is going to take forever to heal, and I'm getting ready to start my 8th year of teaching next week.

I'm not used to feeling like a cancer patient- I've worked almost every day since my diagnosis (except treatment days or scan days), but I just don't know what to expect with this. Has anyone else had this happen or have any words of wisdom they can share? I'm feeling miserable and emotionally horrible, and just want to hear I'm not alone on this one.

Maybe I should start planning my next Disney trip to take my mind off of it.

Thanks in advance! And congrats to everyone who has survived so far!

I have seen so many infected (and worse) ports (and other body implants) as a hospital nurse that I declined one myself. So no, it is not uncommon at all.

I'm sorry to hear about all you've been through, and your diagnosis at such a young age. Glad you found us. Welcome.

 

[kofslinky]

Kofslinky, I did not have chemo so no port, but I sure hope the healing progress is fast.

Are you in much pain still?

The timing is horrible for you right here at the start of the school year.

Please let us know how you do.

I bet others will will post their experiences too.

The pain is starting to get better, but it is a long way from where I would like it to be. The nausea has been the worst at this point. I haven't dealt with it with chemo, so I'm not used to this and how to deal with it.

Pea-n-me- I am quite proud of earning those avatars. Your friend has done a great job with them, and you with the scavenger hunts. I didn't really have much choice in the port- my veins are so small that IVs are nearly impossible, so it really was a great thing... until now.

luvmarypoppins- 300 times?! That's what I was afraid of. I'm hoping the wound closes by Christmas, but I'm not holding my breath for that.

I'm glad I finally jumped in here. Thank you everyone for what you've given so far!

 

[luvmarypoppins]

Dear Sistas....again I am and sorry to have to sadly say that our dear sister PatsMom - Linda has passed away.

She passed away tues. I actually saw something on another cancer forum I follow that is broken down by cancers and one of her bladder cancer friends posted something.

Oh how much I hate this disease. Too many, too soon.

Here is the article.

newhampshire.obituaries.funeral.com/2013/08/30/malone-linda/

 

[Dancind]

That is so very sad. Prayers for her family, I know her DD and mine are about the same age.

 

[snappy]

This is such sad news.

Not that long since Lisa passed.

I am thankful I met her. Remember meeting Patsmom and her husband and Sha and her mom for epcot fireworks in 2011, Maryann? It seems like such a short time ago. I am glad Patsmom made her China trip.

She was a fighter.

 

[Feralpeg]

I am so sad to her this. As Snappy said, I am so glad she got to take her trip to China. Another bright star in the heavens tonight.

 

[Pea-n-Me]

This is the third sad death I've heard of in the past 24 hrs.

 

[CherylDan]

So sorry to hear about PatsMom

 

[robinb]

Oh no! I remember PatsMom. That is so sad .

 

[luvmarypoppins]

Laurie - yes, when I told my dh. His first words were - remember you all met on the bridge in Epcot etc. and he took the picture that you posted on the thread.

I am glad she got to visit China too. Also swimming with the dolphins.

This month is...Thyroid Cancer Awareness month. Remember to check your necks too!

Well I went over my disney plan with ds#3. He said - well there is just one thing that is missing. I said what? Crap I figured it out for 4 parks in under 3 whole complete days etc. He says - I want to have a Mickey Waffle! I said good our hotel has a week end buffet that has them etc.

Starting tomm. we are going to be dog sitting the King Cavaliers again overnight I am so happy! I love the boy dog. He is fat and lazy. The girl dog- She is beyond hyper etc. Goes crazy barking etc. I told the ds you are walking them etc. We have a big fenced in back yard so thats all good too.

Its going to rain here tomm. so I guess the outdoor bbq will be indoors again. sigh.

 

[robinb]

We went to the Cubs game today and they won! My second win of the season and I'm a season ticket holder. Whoo hoo. (not) We drove straight home because Madison was having a cool boat electric parade called Lights on the Lake followed by fireworks. We made it in time for the LAST boat. We then waited for more than an hour for the fireworks but there were none. *sigh* David and I could have hung out in Chicago for dinner!

My surgery is scheduled for Friday. I still have not told my mom ... or really anyone else but David (my DH) and Celia (my DD). I tried to see my mom in Chicago last week to tell her and she refused to see me because she said she was sick. I think it was because her house was a disaster. My sister's family of 5 lives with her and BOTH families are very messy/hoarders. Truth be known, I am no neatnik myself but they are sooooo much worse. I worry about all of them . I guess I'm going to have to call tomorrow and break the news. My sister was in the hospital and nursing home for liver failure and I didn't want to worry my mom about me until my sister came home and she's been home now for a few days.

ETA: I'll let them enjoy a nice Labor Day and tell them tomorrow. The other problem is calling my mom is like hitting a moving target. I never know when she'll be awake or asleep and she's asleep about half the time I call.

 

[Pea-n-Me]

Robin

Barbara (annrae) thinking of you, too, and hoping you are doing ok.

 

[Feralpeg]

Because I wouldn't want my life to get dull, we are now on a boil water alert. There was a big water main break yesterday, in the Summerport area not far from my home. The water was only off for about an hour, but we are supposed to boil water now. So, this morning I get up and go to brush my teeth. I remembered to use the bottled water to brush them. Unfortunately, I forgot and rinsed my toothbrush off with the tap water. Guess it's time for a new toothbrush! lol!

They said to boil water to wash clothes. Well, that's not going to happen. For one, I'm not washing them in the sink. Second, I'd have no idea how to use water that I've boiled in the washing machine. So, if I soak up something bad from my clean clothes, so be it!

Kendall and her new boyfriend (yes, she has a new one already...oh to be young!) spent the night here Saturday night. That was nice. I miss having her here. The dog was in heaven having the company!

On Saturday, I went to Downtown Disney. I haven't been there in ages. I needed to renew my annual pass. It was really nice being there. I've missed walking around listening to the music and just browsing. I had lunch at the Earl of Sandwich, which I love! My taste is finally starting to return and things are really starting to appeal to me. Of course, I'll probably gain back the 25 pounds I lost. lol!

I hope I get to use my annual pass more this year. Last year, it turned out to be a total waste. I had just renewed it shortly before I found out about the cancer. Unfortunately, I didn't get to do many of my favorite things last year, but I intend to rectify that this year!

While I was at DTD, I purchased tickets to MVMCP for Dec 6. Kendall and I will be going to the party with Rich. You may remember Rich. He is a young man from England who used to post on the DIS a lot. He became very good friends with Kendall and she spent time with him while she was living in England. Anyway, I couldn't believe how much the price of the party tickets have gone up! Two tickets were $147. Good grief! That was more than what I paid for the Halloween tickets Kendall and her boyfriend will be using soon. I also decided to browse in World of Disney. As you may remember, I used to do gift baskets. I was totally floored at how expensive the Disney plush are now. The ones that used to be $11.95 are not $17.95. Good thing I'm not doing baskets anymore. At those prices, I wouldn't have a lot of business. I guess I'm really out of the loop.

Nothing special going on today. I'm on my own (except for Luna). So, quiet day.

Hope you are all having a great holiday weekend!

 

[Dancind]

Peg, glad Kendall is still close enough to visit frequently. My DD is trying hard to transfer to Sacramento. If she succeeds, we will be moving too! Don't know where yet, probably not Sac.

Looking forward to some cooler weather. If not here in Albuquerque, maybe at DL in three weeks!