Dis Breast Cancer Survivors Part II -GAGWTA!

[laurabelle]

~~~***GAGWTA sistas***~~~

Dawn-I'll add to the MRI answer... I have them done annually now in lieu of mamms. The breast MRI is different from other types, I have had a brain one too. The first time I wore headphones and they played the radio, the second time, last fall, they used earplugs, no headphones. It made it more comfortable to lay there. Have you ever done yoga or meditation? It helps. I kept my eyes closed, you don't need to see how closed in you are, it won't help you. It is loud, even with the ear plugs. They start an I.V. and do several views without the contrast and then they give it to you. You will feel the contrast going in, some people feel warm, ect. They also had me hold a button, like on a game show, but this one is a panic button to let them know you needed to get out now...I didn't need it. I relaxed so much I almost fell asleep in there. I hung out with Jesus in my happy place...

I did 5yrs of Tam. The only side effects I had was some slight vag. discharge, and leg/toe cramps. My periods were very regular, but irregular periods can be a side effect too.

I think you're doing great!

Loved reading everyone's stories...

Laurie- Your snake story freaked me out!!! It must really be warm there.
BTW- We're at the Vistana Resort, not the Villages. I would love to stay there as well! I'll be thinking of you at POFQ!

The kids and hubby were home yesterday and I told them it was a Disney day! We made Mickey head pancakes for breakfast and talked about our plans. We started packing for our trip! I figured we probably won't be wearing swimsuits and shorts around here during the next month. The kids made Ghirardelli-like sundaes for dessert. I can't wait!

 

[BeadyLady]

I cannot believe how quick this was for you. We figure it will be another 3-6 weeks before surgery. I notice you had chemo, no radiation?

Oh, yes radiation too - 33 times. I was told my my Onc Dr that we would be going Full Court, so now I'm on Tamoxifin.

Chemo is the summer - much easier when the head isn't totally frozen. be sure to get a hat for nighttime. I made my hats, as I found the wig to be too small and hot. It is my theory, that I'm sick - this is what it is - and not to hide the baldness. Besides - I have a lovely head.

 

[TulsaDisneyFamily]

Hello LadiesI am a DH of a BC survivor. My DW was diagnosed in June 04. We have two boys and they were 6 and 8 at the time. I hope you don’t mind me stopping by, telling you our story, and adding a perspective from a DH. I have occasionally stopped by and read some of your stories before. It helps encourage me and reminds me that there is life after cancer. After finding the new thread and catching up on it, I felt lead to add our experience.

My DW had just turned 40 and felt a strong need to have her first mammogram. She was told she needed to come back and have some additional views taken. They found calcifications and we also were told that about 80% of the time they turn out to be nothing. I like to get as much information as I can and we had the mammogram findings. It read microcalcifications with branching. I looked this up and it didn’t look good but I didn’t discuss it with my DW. She had a needle core biopsy in both sides and the doctor called the next day with the results. She was diagnosed with precursor cells for LCIS in the right and invasive LC in the left. I can still remember that day as if it was yesterday. They latter found some DCIS cells in the left after surgery. If you’ll would like to hear about it, I can post later. Long story with many God winks as some refer to them here. The best thing is they did find it early. The area in the left was 5 mm and the area in the right was 3 mm.

The surgeon recommended a mastectomy on the left and to consider one on the right but she told us lumpectomies were also an option. She had been struggling with and praying about which surgery to choose. My DW is a women’s health NP and the day before we had to meet with the surgeon to discuss our decision she was visiting with a patient in her office that had BC and had done a lumpectomy with radiation. During this visit, she felt a wave of peace sweep over her and decided on the lumpectomy. She had the lumpectomies and sentinel nodes removed on the left. We had a great surgeon that prayed with us right before the surgery. After the surgery the surgeon came out and told us the sentinel nodes looked normal but they would be sent for dissection to check them. The surgeon called us at home a couple of days later and told us they found a 0.5 mm spot in the nodes. I also still remember this day like yesterday. Up until this point, we had taken comfort in knowing they found the BC very early and hoped she would not have chemo but we knew this finding would result in the full range of treatment. The surgeon recommended having additional nodes removed and checked so my DW had a second surgery and these nodes came back negative.

Her treatment consisted of 4 rounds of AC and 4 rounds of taxol each 3 weeks apart and about a month of radiation on the left. She has been on tamoxifen for three years. The only days she missed from work were Thursday afternoon for her treatments and one Monday afternoon she wasn’t feeling well and went home early. Work was therapy for her and she was an inspiration to many as she almost always had a smile on her face. We both had many bad days where we cried both together and alone but the experienced change our lives for the better. We experienced so many blessings during and since this time that I would not change anything even if I could. I have a fantastic DW that I love even more after surviving cancer together.

Randy

 

[snappy]

All I can say is Wow, TulsaDisneyfamily. Thanks so much for sharing your story. Any more you care to share as far as further details will be welcomed. I truly believe it helps others starting this journey to hear about the ones that have gone before, along with the informed support.

It is wonderful hearing the story from your perspective. We have been fortunate before with husbands posting, I remember MinnieM3/Beth's posting here. I tried to get DH to post after my surgery, I am not sure if he did or not. Anybody remember any other husbands chiming in?

I would only add to your post that you and your wife are very blessed to have each other.

We also like God winks, share if you can.

Thanks. And welcome to our GAGWTA thread!!!!

BTW, give your wife a big hello!!!!

 

[MerryPoppins]

Hi Randy. You're always welcome here. Glad you found us. It's interesting to hear the story of your journey through a husband's eyes. Thanks for sharing it with us.

Laurie, I never considered both breasts until WAY after my surgery. Once I got comfortable with my new body, I thought it'd almost be more comfortable for me to be matching (if that makes any sense at all). I wouldn't encourage anyone to go that route unless you're sure that's what you want. My mom for example, she says she'd feel "incomplete" without reconstruction. And I feel very complete...I've come to believe my "me" is inside. It's so different from one person to the next. There is no one way that is right for everyone.

 

[Pea-n-Me]

I have occasionally stopped by and read some of your stories before. It helps encourage me and reminds me that there is life after cancer.

If you’ll would like to hear about it, I can post later. Long story with many God winks as some refer to them here.

Thanks so much for posting, Randy. There are days that I question whether the ramblings mean anything to anyone - posting here you just don't know. But then someone lets us know that it's been helpful. So our seemingly senseless conversations are in fact useful. I'm particularly impressed you know what a God Wink is.

I'm glad to hear your wife is doing well. It sounds like our cases were on similar timelines and treatment courses. You sound like an awesome husband and partner in this. Thank you. I would also like to hear the rest of the story.

 

[Amy]

Hi Randy! Glad you found this thread. Like Linda and the others have said, it's nice to get a hubby's perspective.

Update: heard from my oncologist late yesterday afternoon - both my mammogram and ultrasound were clear!! Whatever that lumpy lymph node she felt either went away, or it was just normal lumpiness. Whew; what a relief!!

She did some blood work, too, and said that my estrogen was nice and low (since my cancer was ER/PR+), but that my other hormones are way out of whack. Gee, DH could have told her that! She's sending me a copy of the blood work so I can show my gyne at my yearly appt. next month and see what he thinks. I'm only 48, and still have my ovaries, so it's possible my body isn't quite ready for full menopause yet.

Ok, off to make dinner. GAGWTA!!

 

[TulsaDisneyFamily]

Thanks for the warm welcome. I told my DW I was writing this and she has read it. I think I will be able to get her to join in after I have told our story. She doesn’t like typing on the computer as much as me and wouldn’t add all the detail. I hope I don’t get too detailed.

The Day Our Lives Changed Forever – Part 1. It is a long story and I am going to break it down into a few parts to make it easier. A little background first. It was a Friday and I had the day off. We had just put our house on the market a week earlier and I had some cleaning up I needed to finish outside. We had put our house up for sale because there had been a lot of commercial development around us and we were looking for an acreage to get a little further from town. We had found a good lot and were ready to build. I had a large dirt pile I needed to get rid of and had spent all day loading it on a friend’s trailer. I had already hauled one load off earlier in the week and my DW helped me unload it. I was finished loading it by the time my DW got home from work around 4:00.

Her surgeon called with the terrible news shortly after she got home. We sat and cried together and held each other for quite awhile. By the time we had settled down some it was about dinner time and I suggested we go to one of her favorite Mexican restaurants. She loves Mexican food and I thought it might help her feel a little better. As we were being seated we ran into my best friend from college as they were leaving (our first God wink). He lived just a couple of miles from us but we had drifted apart and I hadn’t seen him for several years. My DW was in a social sorority with his DW and they saw each other occasionally. At one time we were like family. When we built our first house we lived with his DW’s parents for a month because our house was late being finished. We talked for a couple of minutes and like usual we asked each other how we were doing and we put on a good face and said we were fine still not knowing really how to handle the news. After we were seated I realized I wanted to say more to them and ran outside to catch them but missed them. I called them later that night, told them the news, and talked awhile. We renewed our friendship over the next year and spent a lot of time with them.

We had a good meal and drove back home. When we got there the trailer load of dirt was still waiting on me and I knew I had to get it unloaded so I could return it. I was feeling hopeless because it was getting close to dark and I knew I would have to unload it on my own this time. My DW didn’t want to be left alone so she got the kids in the truck and we left for the dump which was really a property that the owner was trying to fill in and allowed the dumping of dirt and rock. As I was backing the trailer in at the dump to unload it and a guy in small pickup started yelling and waving at me. I didn’t know what to think and tried to ignore him. He drove over to where we were and said he was needing some dirt to fill in a low area in his yard. Most of the dirt at this dump was clayey and rocky but the dirt I had was more like topsoil and it was what he was looking for. He asked if he could have some and of course I said yes (our second God wink). He got in the trailer with me and we filled his small truck up quickly and then he helped me unload the rest of it. I think he unloaded more than I did and we finished in about 30 minutes. It would have taken me hours alone. My DW stayed in the truck the whole time and she told the kids he was an angel and I was thinking the same thing. I know he wasn’t and I saw his pickup around town a few times later, but I do believe that it was the Lord’s timing that placed us there at the same time. Both of us talked later and we felt like the Lord was sending us a message that if we would have faith and trust He would take care of us and He did.

Next – A very sad God Wink that was also a blessing.
Randy

 

[Pea-n-Me]

 

[snappy]

Randy, loved the story about the Lord sending you the man in the truck.

You are a wonderful writer. Keep at it.

We are encouraged to keep journals, someone mentioned journaling here recently (Beadylady)? I like to think some of our posts are like journaling. I know it helps me to put words down, I guess I did not think about it helping someone else as well. Good point, Linda.

I also am amazed about how events become seared in our memory, good and bad events both. Anyone else care to comment on this?

 

[Pea-n-Me]

We are encouraged to keep journals, someone mentioned journalin her recently (Beadylady)? I like to think some of our posts are like journaling. I know it helps me to put words down, I guess I did not think about it helping someone else as well. Good point, Linda.

I also am amazed about how events become seared in our memory, good and bad events both. Anyone else care to comment on this?

Yes, I can't wait to read Randy's next installment. I agree, he's a great writer!

I did journaling at my support center along with meditation and it was extremely helpful. I think of my writings here as sort of a continuation of that. I do keep in mind that hopefully it's helpful to someone, and I also am glad it's here for my kids to read someday if they so desire. I started a journal for them when they were little but it fell to the wayside. A lot of my lifestory and thoughts are here, however. (It would be nice if someday there was software that could extract just one poster's posts - maybe such a thing already exists, I don't know.) I've always felt I had a book in me somewhere but I'm not sure exactly where to focus. Maybe someday.

As for events seared into our memories, yes I think about that a lot. I think about it in my own life; in listening to my 82yo mother recalling (or not being ablt to recall) events; and found it interesting to observe in my aunt who has Alzheimer's (now late stage, unfortunately). The last time my cousin and I took my aunt out to dinner, she spent the whole evening telling us about when she was younger and was a WWII Air Raid (something or other) meaning she was in charge in her neighborhood if an air raid occurred. She remembered every detail about her uniform, training, neighborhood, etc, and interestingly told us her name was (her maiden name). This all being while she couldn't remember what she ate 5 minutes ago. Amazing! I remember events and feelings associated with them a lot, but sometimes in speaking with friends or even my DH or coworkers, they remember things that I don't. So it is a funny thing when you think about it.

Right now I'm amused at some of the things my kids remember or don't remember, and me too. We recently watched some videotapes of them when they were 2yo, and they remembered a little bit, but what was scary is that I kind of didn't recognize them "back then". I mean, I did, of course, but they've changed so much it was hard to see that they were the same people. DH felt the same way so I knew I wasn't completely losing it, LOL. Anyone else have this happen when they see pictures or video of their children when they were younger?

 

[snappy]

Although we have baby pictures on every wall where there isn't a jazz fest poster , I have to admit I don't go back and watch the videos we made so religiously when the kids were younger. I need to have them transferred to DVD. Not sure if I will even watch them even then. I have yet to see DD17's 8th grade video (I had other fish to fry around that time period as I have posted) or DS's mission trip to Honduras (same issue).

Have you heard about the new show called Amnesia whose premise is taking events from their past and seeing if the contestants remember them?

Not sure which network or when it debuts, but it sounds interesting and on this topic for sure.

I'll be willing to bet though that the contestants will NOT include a 54 yo female accountant and breast cancer survivor. Nobody has contacted me yet.

 

[NHAnn]

wow, lots of posts the last few days!

So let me start by saying GAGWTA and apologize in advance for failing to respond to everything!

Snappy--the snake scream would have done me in!! I'm not even going to comment on how warm it is there. The pile of snow off my front walkway is almost as tall as DH....much taller than when I last posted pics I fear it will still be there on the 4th of July! More snow this week coming.

Laurabelle-I'm sorry you've had bouts of not feeling well. I'm vicariously enjoying the trip planning though and love the "Disney Day".
DD and I saw new "Disney Pizza" in the frozen pizza section of the grocery store yesterday! shaped like Mickey heads!! Would have been great for a Disney Day at home!

Linda, once again I have to say, you are such a gem - your perspectiveand your technical knowledge, and your thoughtful and caring heart

Randy--welcome! and thanks for sharing your story. I do think it is therapeutic to write it out for some people. And I agree, you write very well!!

Dawn-- I just want to say I am so glad you found us and also that you are doing great. The point you are at in the process IS the most difficult emotionally I think. My DH had a phrase he used with me during those weeks before the pathology came back, that we use here on this thread a lot: "DON'T BLEED BEFORE YOU'RE SHOT!" I'd be sitting on the computer reading into the wee hours online about advanced metastatic disease, crying, fretting about losing my hair, etc....and I ended up with non-invasive DCIS and didn't need chemo. I swear he almost ripped the computer cords out of the wall one night and made me go to bed. There's so much info to absorb, so many aspects to deal with...self, spouse, children, work, community. You will work it out, it's not easy but you will work it out as to what's best for you in all those compartments..and then you will move on step by step. You will have ups and downs, but you will make it, and we'll be here for you!


As far as stories/reactions to diagnosis...mine is pretty much chronicled near the beginning of the part I GAGWTA thread! When this part 2 thread started a few weeks ago, I went back and read through the start of the first thread and "my" story started just a few pages in. It was a little overwhelming and a bit surreal to "go back there".

I too had no palpable lump but suspicious microcalcifications, which after excisional biopsyshowed a fairly large area of DCIS. Reexcision got clear margins and no evidence of invasive cancer though, and I opted for no further surgery, had 5 weeks of radiation and am just over halfway through a 5 year clinical trial comparing the effectiveness of Arimidex vs. Tamoxifen for preventing recurrence in postmenopausal women (I had a hysterectomy at age 44, 4 yrs prior to my Dx) with estrogen+ early stage cancer. I do not know which one I am on, neither does my onc, only the natinal trial administrators do. (Though my docs and I all kind of think it is Arimidex based on the side effects I experience...joint pain and stiffness, especially in my legs/feet). I consider myself fortunate that it was not invasive and that I had the options that I had. Although at the time, I found it very difficult to have to MAKE the decision while still reeling from the shock of the diagnosis process itself...unlike someone who has multiple areas or a location that makes lumpectomy impossible or impractical.

I think the stories on this thread are so demonstrative of the fact that there is no right or wrong, best or worst, way to proceed/react/decide. I could have opted for mastectomy, or even double mastectomy, but after talking to the surgeon, reading, talking to other survivors including in my extended family as well as on this thread I decided on the lumpextomy with radiation ....I never get that "walking time bomb" feeling that some women do, about either the treated breast or the other one...even after a biopsy (benign) of calcifications in the other breast less than a year after my original diagnosis.

So, in May, I'll be three years out from diagnosis, and have had a lot of other things happen since that leave me feeling overwhelmed a lot...(grandson with leukemia, doing well now...building our new dream home and now unable to sell the old one due to crummy timing in the real estate market...my beloved mother died last fall....) but at the end of the day...hey, life is good, I'm a survivor, I don't sweat the small stuff (well OK maybe sometimes I do but not as much ) .

Hope you all enjoy the rest of the weekend !!

 

[snappy]

I can't believe this is happening, DS19 just found our Snake friend from Friday's twin in his room.

At least he did not scream.

I am not sure if I can take this.

 

[MerryPoppins]

Laurie, tell your DH to take him a little further from "home" this time. Maybe this fellow just really likes you guys.

 

[snappy]

Maybe we should just start tagging them.

I was afraid to walk down the long hallway (I have the image of the green mile in my head. . . what a wonderful movie) to the living room today.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Randy- I think it's terrific that you are able to share your co-survivor story! A site you may be interested in http://www.menagainstbreastcancer.org/
I hope your wife joins us someday!

Ann- Having "Disney days" and getting caught up in the trip planning is one of my (expensive) coping mechanisms! I know you're an Epcot fan like me. I love the park music! I found this little gem the other day. You have to create an account, then can download "torrents" which leads to MP3s of tons to background music after you open them with another downloaded program. I know it sounds complicated, but if I can figure it out anyone can! They do have a tutorial on the site that explains it better than I could. I downloaded a bunch of Epcot stuff...right now I'm listening to a long loop of music from Innoventions Plaza, and I put it on my Ipod! It makes me happy! http://www.mousebits.com

I also like http://www.subsonicradio.com/station/now_playing.php if you just want to listen without downloading.

Laurie-

 

[snappy]

Speaking of snakes. . .

When I told one of my co-workers who moved here from N. O. after Katrina, she told me when she returned to clean out her flooded house it was full of snakes, both live and dead. She said she took one look inside and left again, decided there was nothing left to salvage so she would wait till the water drained out and it dried out a bit (hopefully the live ones would vacate????)to face cleaning it out.

You know I never thought much about the snake issue.

If I had I would never allowed DH to go down there and help with MIL's and Claudette's houses.

What we get for living near canals and such.

Not sure if I posted it here but MIL is rebuilding her house, the contractor has started the deconstruction. She got some $$$ from Louisiana's road home program, along with her insurance $$$, she is going to make it nicer than it ever was, but not raising it. The raising part was far too much $$$ so it will be at the original elevation, raised only about 4 feet.
Our niece Jennifer and her new baby (born on Thursday) and her significant other are going to move in when it is done. Maybe our DS19 as well (better alternative to the dorm, and it is very close to his university). It is a big house.

I like the idea of my little 83 yo Irish MIL triumphing over the damage. I think we should throw a big honking party when the house is finished.

I'll pay for it!!!!

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Are the snakes keeping everyone away? Where's St. Patrick when you need him?

Not much going on here. I had my blood drawn yesterday to check my WBC again. Hopefully I'll hear back tomorrow. Staying in today, just laying low.

Be well!

 

[lookingforward]

Hi everyone!

Dawn, I was just diagnosed in November so I totally understand how much you are trying to process right now. I am glad you feel good about the hospital and doctors, that is a huge part of getting better.

I am smack dab in the middle of my chemotherapy treatment, three down, three to go and am counting the days till it is over. It is tough but its not impossible. I wish you all the best, lean on those who care (including US! ). The "gang" here have been wonderful and supportive and kind in my darkest hours.

I have a nine year old daughter (and two teen sons) and she has had to adapt to quite a lot of changes, etc. in me. The boys compartmentalize it a little bit, but she was confused at first. Every kid is different (I'm a social worker too!) but for her it took upfront honesty and including her in things like when I shaved my head,e tc. She wants to be around me a lot and I make sure to cuddle with her every night, keeping things as normal as possible. Its working out.

Hope all are doing well, sorry I have been out of touch....the last chemo was a real challenge. Gearing up for number four on 3/6!