Dis Breast Cancer Survivors Part IV - GAGWTA

[smiley_face2]

I checked out the photo of the tile on the Disneyland thread you referred to above. I love that style of tile. I think you are right , it will be nice in solid antique white. What color grout are you thinking of? I regret the white grout I picked out the white tile on all of the vanity tops is our bathrooms since it is hard to keep clean.

Oh I don't know.... I was thinking white, but you are right about keeping it clean! the counter top is marble with some nice grey and gold veining in it so I could probably go with a grey to match.... I will have to think about that!

 

[snappy]

Someone once told me grey is the best color for grout.

 

[smiley_face2]

Someone once told me grey is the best color for grout.

Well it will probably end up that color down the road anyway right? How are you feeling? I would think probably still pretty emotinally raw Are you doing anything nice this weekend? We had our sons 4 little girls over for the night, and a nice visit. They came over with a Uhaul to get the kids giant play fort, trampoline, and the deluxe spa that she had bought all just a few months before they moved away. so it was a short but sweet visit. But I am seriously exhausted!! Been doing way too much this last week with running around getting stuff for this reno, dr appointments, having the kids, I probably won't even get dressed tomorrow!! Oh and....we found out to get rid of construction waste now....drywall in particular...it has to be tested for asbestos. Well this old room has not been renovated since the 70's so of course it tested positive!! argh....means another really large expense I was not counting on.... the money it cost to deal with it, could have bought me the flooring I want for the laundry room too!

 

[snappy]

Yes to the grout ending up that way anyway!

 

[snappy]

I have come a long way since saying goodbye to Snappy girl Monday night. I had no choice but to go to the office Tuesday. I managed, only thanks to Linda here on our thread. We were in touch by text for several hours, which helped me get into my right mind so I could hold it together to some degree. I was unable to hold a conversation without emotion so I focused on finishing payroll. Of course I made a mistake I had never done before but luckily was able to recover quickly. Tuesday night in the interest of calming down and actually getting some sleep, I took a Zanax that I really intended to take before the vet arrived Monday night. Never having taken that med before I did not expect it to turn me into a zombie, but it did. No more Zanax!

I have cried less each day, today just one quick sob when I first woke up. It's kind of like I expect to see her, then everything resurfaces and reality hits me.

I decided several things. First dd18 needs me to be present, graduation is looming, the beautiful senior breakfast was this past Thursday. I attended and helped serve, dd18 and I met a wonderful new friend who actually works for the dean in the college at LSU where dd18's plans to major, coastal environmental studies. She described the faculty as rock stars, very high profile at LSU, top professors, who set the bar for other disciplines. She offered us her office and cell numbers and told dd to come see her anytime in her office. It was a coincidence that was meant to be.

Second, it came to me that if snappy were here, she would make it her mission to cheer me up. I have no doubt she would want me to be happy and smile, not cry.

So I am doing a lot of self talk. I also decided yesterday to get busy and plan our graduation celebration WDW trip. This new fastband stuff is tricky although the system cooperated more with me today. I also took mom to mass tonight and spent time chilling with her.

Tonight I am looking at proofs of the photos my cousin took of dd at a museum here about a week ago in picturesque outside locations. My cousin is a professional photographer and there are so many good ones. Not sure how we are going to narrow down what we want printed for graduation pictures.

I had thought I might head to New Orleans this weekend to be with my dear friend there, but we postponed until next week. I think it's for the best as I hopefully will catch up on my sleep by then.

I totally understand what you meant when you said you might not get dressed tomorrow. It's actually a grand idea!

By the way, I thought I would say here, in case anyone is hesitant to continue to call me by my Dis name, Snappy, I would prefer if you continue to call me Snappy or Laurie as you like just as always. I have somehow come to the place where hearing her name and talking about her no longer hurts. Somehow the dear girl is getting me there, I swear I saw her in a pool of light reflected on the brick floor of our beautiful church this afternoon during mass. It was one of Linda's Godwinks.

 

[amberg93]

Hi. I'm new to this group but I'm totes glad I found it.

My name is Amber, I'm 21 and I just went into remission in March for B Cell Lymphoma. I'm slowly trying to get back into shape. I dropped about 20 pounds when I was sick but I'm finding that my body is doing well with at least walking and such. I have been going to the gym and my body feels comfortable walking for 45 minutes or so on the treadmill (but then I used to work at an amusement park where literally besides my two - sometimes one - half hour breaks a day, I walked for about 10 to 11 hours straight before I got sick). So I'm glad to see that I'm doing at least that.

Also my hair has been growing back (it fell out during chemo) but I've been dismayed to find that it has grown back curly. Super curly. I feel like Cory Matthews. My hair used to have some wave to it when it got long but was mostly straight before. So I'm dealing with trying to adjust my image of myself.

 

[Pea-n-Me]

I have come a long way since saying goodbye to Snappy girl Monday night. I had no choice but to go to the office Tuesday. I managed, only thanks to Linda here on our thread. We were in touch by text for several hours, which helped me get into my right mind so I could hold it together to some degree. I was unable to hold a conversation without emotion so I focused on finishing payroll. Of course I made a mistake I had never done before but luckily was able to recover quickly. Tuesday night in the interest of calming down and actually getting some sleep, I took a Zanax that I really intended to take before the vet arrived Monday night. Never having taken that med before I did not expect it to turn me into a zombie, but it did. No more Zanax!

I have cried less each day, today just one quick sob when I first woke up. It's kind of like I expect to see her, then everything resurfaces and reality hits me.

I decided several things. First dd18 needs me to be present, graduation is looming, the beautiful senior breakfast was this past Thursday. I attended and helped serve, dd18 and I met a wonderful new friend who actually works for the dean in the college at LSU where dd18's plans to major, coastal environmental studies. She described the faculty as rock stars, very high profile at LSU, top professors, who set the bar for other disciplines. She offered us her office and cell numbers and told dd to come see her anytime in her office. It was a coincidence that was meant to be.

Second, it came to me that if snappy were here, she would make it her mission to cheer me up. I have no doubt she would want me to be happy and smile, not cry.

So I am doing a lot of self talk. I also decided yesterday to get busy and plan our graduation celebration WDW trip. This new fastband stuff is tricky although the system cooperated more with me today. I also took mom to mass tonight and spent time chilling with her.

Tonight I am looking at proofs of the photos my cousin took of dd at a museum here about a week ago in picturesque outside locations. My cousin is a professional photographer and there are so many good ones. Not sure how we are going to narrow down what we want printed for graduation pictures.

I had thought I might head to New Orleans this weekend to be with my dear friend there, but we postponed until next week. I think it's for the best as I hopefully will catch up on my sleep by then.

I totally understand what you meant when you said you might not get dressed tomorrow. It's actually a grand idea!

By the way, I thought I would say here, in case anyone is hesitant to continue to call me by my Dis name, Snappy, I would prefer if you continue to call me Snappy or Laurie as you like just as always. I have somehow come to the place where hearing her name and talking about her no longer hurts. Somehow the dear girl is getting me there, I swear I saw her in a pool of light reflected on the brick floor of our beautiful church this afternoon during mass. It was one of Linda's Godwinks.

You sound good.

Aren't you glad you didn't take the Xanax before you started payroll? And thank goodness for Siri!!

Smiley, your renovations sound awesome. I so love renovating!

Yesterday I came home from a long shift at work only to find my bathroom flooded from a leaking pipe. Thankfully there wasn't a lot of water damage because I'd had some bins under the sink to hold supplies and much of the water was caught in there. It's always something, isn't it? We still have a long laundry list of things we're doing around here, too.

Cheryl, how are you doing? Keeping you in my prayers, and also everyone else here.

lmp, you always have a lot going on, too! Hope everything goes well with your DSs. How was the Letterman show? We've done it about six times and I always wanted to take the kids. May not have the chance any longer, but Dave's gotten cranky over the past few years so I don't even watch him much anymore, lol.

Welcome, Amber. Glad you found us. Glad you're doing well after your treatment, and glad you're getting your hair back. I actually liked the curls, so for me it wasn't a problem. I was sad when it straightened back out, lol. I wear my hair short, though, and I think curls are easier on short hair, aren't they? (No clue, really.)

 

[amberg93]

Welcome, Amber. Glad you found us. Glad you're doing well after your treatment, and glad you're getting your hair back. I actually liked the curls, so for me it wasn't a problem. I was sad when it straightened back out, lol. I wear my hair short, though, and I think curls are easier on short hair, aren't they? (No clue, really.)

Thank you

Ooh, I hope mine will straighten back out. I never wear my hair short so it's like an experience for me to have short hair and have curly hair. I prefer more shoulder length or longer. What I will say for it is that it's super easy maintenance. I barely have to do anything to it. Of course, I don't like how it looks either so...

 

[Pea-n-Me]

Thank you

Ooh, I hope mine will straighten back out. I never wear my hair short so it's like an experience for me to have short hair and have curly hair. I prefer more shoulder length or longer. What I will say for it is that it's super easy maintenance. I barely have to do anything to it. Of course, I don't like how it looks either so...

Maybe you'll come to like it, then! My DD wears her hair long so I can understand. What about working with a hair stylist to help you figure out how best to manage it?

How are you dealing with having gone through such a difficult ordeal while so young? Did your treatment disrupt your schoolwork or anything?

 

[amberg93]

Maybe you'll come to like it, then! My DD wears her hair long so I can understand. What about working with a hair stylist to help you figure out how best to manage it?

How are you dealing with having gone through such a difficult ordeal while so young? Did your treatment disrupt your schoolwork or anything?

I haven't been working with a stylist but there really isn't much to do I don't think. I mean, I could straighten it but it looks like my brother's hair and really makes us look a lot alike when I do that some I've been avoiding it

I get asked that a lot and I just... it's a part of my life? I can't compare things really because it's just what it is. I had an interesting experience because I didn't get diagnosed traditionally. I was working at Michigan's Adventure Amusement park and was having trouble breathing so I went into the hospital and they gave me an x-ray and found a mass between my lungs. I got admitted and they did a needle biopsy, but it came back with too small a sample so they had to open me up. I stopped breathing when they uninitiated me because the tumor grew into my throat so I had to be incubated by an infant sized tube and had to go for emergency radiation that night. And then they had to keep me in a coma for two weeks and eventually had to treach me and start chemo during that time.

So I woke up, unable to talk, tied to a bed so I wouldn't pull my tubes out, losing my hair and being told, "Oh by the way, you've got lymphoma." So I really just like woke up and it was my new life. I woke up on lots of pain meds and stuff.

But I mean, I think I adjusted well and I had my 6 rounds of chemo and my 18 rounds of radiation. I just (last week) finally got off my pain patches. So, that was another big deal for me.

I wasn't actually in school and I'm glad about that because after all this I've shifted my plans from wanting to be a primary school teacher to wanting to be a nurse. But I was waiting for my Canadian immigration to go through so I could be with my wife and leave Michigan at the time, so I just basically missed out on work.

 

[Pea-n-Me]

Good for you. You have been through a lot. I am a nurse, so if there's anything I can help you with, let me know! I had a patient one time who told me he was an engineering student in college fooling around with an XRay machine, when his professors looked at his chest xray and told him he better get to get to a hospital, which he did. When he told me the story, he was in his 50s, so he did well long term.

 

[snappy]

I haven't been working with a stylist but there really isn't much to do I don't think. I mean, I could straighten it but it looks like my brother's hair and really makes us look a lot alike when I do that some I've been avoiding it

I get asked that a lot and I just... it's a part of my life? I can't compare things really because it's just what it is. I had an interesting experience because I didn't get diagnosed traditionally. I was working at Michigan's Adventure Amusement park and was having trouble breathing so I went into the hospital and they gave me an x-ray and found a mass between my lungs. I got admitted and they did a needle biopsy, but it came back with too small a sample so they had to open me up. I stopped breathing when they uninitiated me because the tumor grew into my throat so I had to be incubated by an infant sized tube and had to go for emergency radiation that night. And then they had to keep me in a coma for two weeks and eventually had to treach me and start chemo during that time.

So I woke up, unable to talk, tied to a bed so I wouldn't pull my tubes out, losing my hair and being told, "Oh by the way, you've got lymphoma." So I really just like woke up and it was my new life. I woke up on lots of pain meds and stuff.

But I mean, I think I adjusted well and I had my 6 rounds of chemo and my 18 rounds of radiation. I just (last week) finally got off my pain patches. So, that was another big deal for me.

I wasn't actually in school and I'm glad about that because after all this I've shifted my plans from wanting to be a primary school teacher to wanting to be a nurse. But I was waiting for my Canadian immigration to go through so I could be with my wife and leave Michigan at the time, so I just basically missed out on work.

I believe you adjusted/handled things very well.

Congrats on your reemission and for getting off the pain meds.

I would think you potentially would be a great nurse, after hearing about what you have been through.

I remember commenting on the warmed blankets that was provided to me during the stereotactic biopsy in 2004. I was told an administrator who had been treated for cancer instituted the use of the warmed blankets. Living through treatment changes your prospective and can make you more compassionate. We all want compassionate nurses!!!

 

[amberg93]

Thanks. I'm hoping to start school in the winter term for the Nursing program. I know it'll be difficult but that's what I want to do now and I want to help people get through things because it is difficult and sometimes a nurse can really make or break a situation. I had one who was terrible to me and I decided, I wanted to be a nurse so I could be better to people.

Thanks snappy. That is awesome about the warmed blankets, I didn't know that. I used them all the time, but I had no clue that someone who was a survivor was the one behind that. It's awesome. I doubt I'll have that much change in things, but if I can make a day better for someone than that's enough for me.

 

[kofslinky]

Amber- so sorry you had to find the group, but I'm glad you did. What an ordeal! It sounds like you're handling it quite well and I'm glad you're doing well!! As for Corey Mathews hair, I think of it better than than nothing! Mine came back straight as always, but if possible finer and thinner. I've been off chemo for over a year and it still hasn't filled in properly. Everyone comments on how long its getting, but I still refuse to go without a hat because it looks so thin and nasty. Hopefully yours will come back lovely, and maybe even straighten out. I have a friend who is a stylist who I have trim up my hair every once in a while. She thinks it will eventually fill back in and look great. I hope she's right! The nice part about seeing her is that she does make it look better than I think it is, so I would recommend seeing someone to help make it the best it can be until you're happy with it.

Snappy- I'm very sorry about Snappy. Keep smiling whenever possible. Graduation trip to WDW sounds very exciting! I have been with the new MagicBands and FP+. It was a lot at first, but once we got everything planned (FP+ was the hardest part) it was great! We didn't have any problems, and it was great not worrying about rope drop to get TSMM fast passes. And it sounds like you've got great graduation pictures for your dd. Such an exciting time!

Smiley- I LOVE that you're renovating your house and using Disney-esqe tiles! I love the little touches that make us happy, and it's things like that I like the most! Can't wait to see the finished product!

Pea- lucky for the containers under the sink! I'm glad there wasn't too much damage!

Cheryl- here's hoping you're feeling better!!

LMP- I hope the knee is doing better! Knees can be such a pain sometimes.

Well it sounded like we all had scans at the same time. I just got back the results of my CAT scan, and I'm still clean and boring. My oncologist keeps telling me to continue to be her "miracle patient", and I'm happy to oblige. We've decided to do a mammogram to see what the lump looks like, and I'm going to meet with my surgeon early next month to plan a lumpectomy (if we can find the lump to take out), with possible removal of a couple lymph nodes that were cancerous. The theory is if we've got no active cancer, we should take out what used to be cancer and hopefully that will prevent the cancer from coming back in the future. She also thinks I may become fertile again, but I'm not as convinced as she is. I'm trying to find a way to figure out if I am or not (without getting pregnant) so I know, but I haven't found a way yet. It's so weird to think that I may be headed for a new normal of cancer-free and no doctor's appointments every week! I won't go back to see my oncologist for three more months, and she doesn't want any scans in the meantime. I think this will be the longest I'll have gone without a scan in 3.5 years! It's almost scary!

Spring is finally arriving here in Maine. The snow is finally all gone, and we even hit mid to upper 60's yesterday! Today it's back down in the 50's with showers, but yesterday was great. Daffodils are out, trees are starting to bud, grass is turning green. Winter may finally be over!

Wishing everyone the best, and sending positive thoughts your way! (Sorry I don't write more here, but I am keeping track of everyone and lurking.) GAGWTA!

 

[amberg93]

kofslinky - Thanks It's really thick so I'm lucky that it's coming back that way, I suppose. I just have to adjust. But it looks like this currently so, it's a big adjustment from my pre-cancer hair that looked like this (sorta, it's a little older of a picture). I might consider seeing someone to help me out, I just don't know what to do with it either way.

So glad to hear that your CAT scan is clear. Good for you to be all clean. And I hope you do become fertile again, I know that was a huge worry for me. I mean, technically, we don't know if I am or not because we haven't done any tests but there's a low risk that I'm not. But I'm like you, I'm a bit of a pessimist until it happens. Still great news to go without appointments and scans. It'll probably be nice just to get back to 'real life'.

I'm glad the weather in Maine has been nice. It's been raining like all week here. I'd prefer the snow But I'm glad for spring.

Also, I noticed your counter and I'm super jealous about your Poly trip! I hope you have a great time planning it.

 

[snappy]

Thanks. I'm hoping to start school in the winter term for the Nursing program. I know it'll be difficult but that's what I want to do now and I want to help people get through things because it is difficult and sometimes a nurse can really make or break a situation. I had one who was terrible to me and I decided, I wanted to be a nurse so I could be better to people.

Thanks snappy. That is awesome about the warmed blankets, I didn't know that. I used them all the time, but I had no clue that someone who was a survivor was the one behind that. It's awesome. I doubt I'll have that much change in things, but if I can make a day better for someone than that's enough for me.

Ah, I doubt that this guy was the first to come up with the idea of of warming blankets, but he was instrumental in bringing them to the hospital (and treatment/diagnosis) rooms where I go for stuff.

 

[Pea-n-Me]

kofslinky - Thanks It's really thick so I'm lucky that it's coming back that way, I suppose. I just have to adjust. But it looks like this currently so, it's a big adjustment from my pre-cancer hair that looked like this (sorta, it's a little older of a picture). I might consider seeing someone to help me out, I just don't know what to do with it either way.

So glad to hear that your CAT scan is clear. Good for you to be all clean. And I hope you do become fertile again, I know that was a huge worry for me. I mean, technically, we don't know if I am or not because we haven't done any tests but there's a low risk that I'm not. But I'm like you, I'm a bit of a pessimist until it happens. Still great news to go without appointments and scans. It'll probably be nice just to get back to 'real life'.

I'm glad the weather in Maine has been nice. It's been raining like all week here. I'd prefer the snow But I'm glad for spring.

Also, I noticed your counter and I'm super jealous about your Poly trip! I hope you have a great time planning it.

I think your hair looks adorable! Make sure you have some good styling products on hand, and play around with it. Use your fingers, and not a brush, to blow dry. Work with it, and not against it. My hair is something like that, and even though it's technically straight, I can sometimes find a little bit of natural curl and run with it. My DD is more your age, and she likes her hair like you had yours previously. So I understand it's probably so strange for you. But have some fun with it! Now's a good time of year for that.

As for fertility, well, I struggled with having children myself, but I did have 5 yr old twins when I was diagnosed. Anyway, they said it was a 50-50 chance I'd get it back again, and I did. Ten years later, my GYN can't believe how well my ovaries are still functioning, given my age and the chemo, etc. We just talked about it recently. I hope it's the same for both you and koflinsky.

 

[amberg93]

snappy - still, it's pretty cool that he was able to accomplish something like that. I'm very thankful. I was cold all the time and it was summer too so the air conditioning was always going at the hospital and the cancer center.

Linda - Thanks for the tips. It's a weird place for me to be, I think, because I've always liked longer hair. My mom chopped it all off to about the current length when I was young because I used to chew on it and it looked like I was a little boy and people would call me one. I got teased so much. Oh I abhorred it so. I think I've still got resentment toward short hair since then. And yeah, at least with summer coming up it won't be terrible having short hair.

That's awesome that you came back from it like that. And twins pre-cancer, wow you must have had your hands full. I can't even imagine having to have kids and go through treatments. Though my biggest worry was that I'd be a carrier, but nope, my cancer (as I was told at the University of Michigan) "has no rhyme or reason. It just happens, mostly to young girls and we can't find a reason. It's not hereditary and it's not environmentally caused." Go figure. And that's why I'm skeptical of my odds even though they're pretty good, just because the odds of me having cancer to begin with were so minimal.

 

[luvmarypoppins]

amber - welcome. You surely have been through a lot at your young age. We do have a poster here who also has B Cell I am sure, Candy, but she doesnt have a computer right now so she hasnt posted. She has had some bumps but is doing well. Your journey sounds scarey though and I did some of the things you did. I have thy ca and they thought at one time I had lymphoma. They also thought the tumor was in my chest at first too. I ended up in a coma too but that was because of the drs. mistake of accidently cutting my jugular vein and I almost bled out. They told me they thought they would have to trach me too but they didnt end up doing it. Wishing you all the best and have a great trip. I am sure you will make a great nurse. My youngest ds is graduating from nursing school in 2 weeks.

Cheryl - thinking of you and hoping you are feeling ok.

kofslinky - great news on the scan. I cant comment on the fertility stuff. I got instant menopause after my ca surgery. I am sure it is of concern for you. I hope you have a great trip to the Poly. It used to be my favorite resort. I dont think I could stay there now with all the construction going on, monorail hours shortened etc. My favorite was always asking for Samoa Volcano pool view 3rd floor. Anything but the Rarotonga parking lot view. We have been in Aearotorea (sp.). too . I always wanted to be closer to the GCH because we would go in August and would always end up cutting in the buildings to cool off or get out of the rain etc.

Laurie - thinking of you too and sure you are getting into graduation mode for dd

smiley -how are the renovations going

Linda - Yes the ds loved Letterman. They were in the last row center on the bottom. They said they were sitting next to 2 girls from Sweeden who couldnt speak a word of English. They said the best part was seeing Rupert G. and buying some stuff from him. Also a certain ds took an umbrella that they were suppose to return while waiting outside in the rain. lol.

Hmm, whats evryone ones mothers day plans. I want peace and quiet and a nice dinner cooked by the ds. Ds 1 says oh I will make you some cereal

Ds 1 had his knee mri so its wait and see. I told dh to make an eye appt. for the both of s. He said oh I made one for me and they said I havent been there for 4 years. I said what about me?? ugh.

GAGWTA

 

[luvmarypoppins]

How is everyone?

I am feeling only slight side effects from the infusion. I am having bone pain. It seems to be in the bones and areas that are a problem anyway. Last night for some strange reason my R jaw popped twice really loud. Scared even dh. But this pain is a listed and expected side effect. The nurse told me to take tylenol etc. if needed. I liked taking ds with me. He talked to the nurse alot. I felt bad she seemed to be ignoring the other poor guy who was in the room and getting infused with something with us.

Proud mom brag - well I dont actually know what I am bragging about yet. Ds2 is suppose to get some graduation picture taken at college next week. This is some kind of publicity for the college. So we dont know what he will show up on. He had to consent to do this as part of his scholarship and promoting the college etc. He is excited.

Dh got the appt. with me for the eye dr. so we both are going Mon.

Next on my list is the long overdue neck ultrasound and the dentist.

GAGWTA