Dis Breast Cancer Survivors Part II -GAGWTA!

[snappy]

A few suggestions:
- Bring along a notebook and a pen. Take notes. An hour after you leave, you won't be able to remember what the doctor said.

- I would hesitate to run to the computer to look stuff up. There's just such a wealth of information there, but only a tiny bit of it will apply to you. Talk to your doctors, and ask them the questions.

- Once you know what you're dealing with, let the crew here know. They'll have some of the practical answers you'll need.

-It's OK to cry. (Ask my assistant principal. I had a total meltdown in his office Monday morning talking about the radiation. He was a total sweetie.) People will understandably give you lots of slack... don't be afraid to take it.

Feel free to PM me if I can be of any help!!

Great ideas from one of our wonderful newer sistas here.
I mean these are great!!

 

[grammynelliebelle]

GAGWTA! Welcome LuvMarypoppins! You will find a lot of support and caring here.
Laura, glad you can get some samples of your new med. Good luck with it.
Alice, we are in Nj and have most of our relatives on LI. Sounds like a storm coming our way. Its great that the major cancer centers now are coming into the local areas.
I called the MRI place this am and my cd of the mri is ready and the report is dictated and they are printing one for me. I am going to pick it up this am. I dont expect the dr to call until friday as I think he does surgery on Thursdays. I have been very anxious despite my efforts not to dwell on things. DH and I decided to pick up the films, bring them home for safekeeping and then head to Atlantic City! It is about an hour away and we had a comp for a free room and buffett. They are really hurting and are trying to lure people down. We are very small time slot players but they even want our nickles and quarters. They also have a nice indoor pool. It works for me! Maybe we will get snowed in down there.
Best to all. One week until Christmas. Carol (Grammy)

 

[MerryPoppins]

Carol, a getaway sounds very relaxing...just what you need. Have fun.

Welcome luvmarypoppins. Ask for copies of all your lab reports, too. It really helps if you want to look things up when you're back home. I keep a file.

Yay for free samples! Glad you get to try the new drug.

My kids will both be out of school after tomorrow. Trying to finish all my Christmas prep in that time. It's hectic around here.

 

[NHAnn]

Belated happy cancerversary Laura!!

Alice, I had radiation for 5 weeks for my DCIS. It's inconvenient to have to go daily, but the treatment itself is not painful at all. Redness develops over time... and in some women to some extent actual burns/blisters. The fatigue also affects some differently than others, mine was a weariness. Just so weary at the end of the day that I didn't feel like moving. So I milked it and gave up cooking. It was summer, DH likes to grill, so all was well The techs at my center were wonderful, and the rad onc nurse too (who was a survivor herself) gave me great tips on lotions, and nice Aquaphor imbedded gauzey pads.

Carol, glad the test went well and I love your little getaway plan!! Hang in.

luvmarypoppins...welcome

I was wishing we'd hear from Gemjoy on her results....sending "benign" vibes!!

I know I missed someone...so GAGWTA to all!!

I am really sad today, had an e-mail last night from the unofficial "secretary" of my support group.... yes, we lost another sister. Only 39 years old, leaving a 5 year old. I stood right next to her in the Survivor photo at the Making Strides walk less than 2 months ago. She was looking well. But her liver failed, very recently. Her obit describes her as waging her 3 year battle with "grace and determination". I think I may have posted a bit about her a year or so ago, she had sent a very inspiring letter to our group when her treatments after recurrence were going very well. Special lady.
Sorry to be a downer.

Anyway....we are headed to Massachusetts this weekend, in between snowstorms forecast for Friday and Sunday, for my niece's wedding Saturday evening. It will be good to be with family, Colorado sis & family are coming out too, we're springing dad from the nursing home to go, at least for ceremony and dinner and as long as he feels up the rest of the reception It's his first grandchild to marry. I kam so wishing my mom was here in person for this. She'd have had such fun with the shower and the planning and such, I just know at the ceremony I'll cry, even though I know she'll be there in spirit.

We had fun tonight at granddaughter Mady's school Christmas concert Kids are so cute singing those songs!!
My shopping and wrapping are mostly done, in the food planning/shopping I need to get organized on. Not for Christmas day...I know what I need tobring tomy sister's...but for home here Xmas Eve, and then the 26th when all the kids, sig others and grandkids come here in the afternoon.

 

[Pea-n-Me]

I'm sorry about your friend, Ann. I posted something similar the other day. Such a hard time of year for a tragic loss like that. Uggh. I hope you have wonderful holidays with your family. (Hope the weather holds out.)

We're expecting a big storm tomorrow, about a foot of snow. School is letting out early and fortunately, the vast majority of our shopping is done and DH and I are now off for the weekend so we can be happily snowed in! (Normally both of us are trudging to and from work in the snow so this is a big deal for us! ) Bring it on!!

I didn't mention this before because I was waiting to hear final results, but DS had a serious infection in his leg last weekend. Saturday after two hours of vigorous baseball practice (during which you never would have known anything was wrong), he got in the car and began crying, telling me his leg was killing him. I nearly when I saw his knee - it was hugely infected and looked to me like it could be MRSA (and I had absolutely no idea how he could have gotten it as the skin wasn't broken and he's been wearing pants exclusively for weeks). We brought him right to our docs and they were concerned about the same thing, and also concerned that it could have invaded the joint inside his knee. They lanced it and sent it off for culture, then started him on double antibiotics. For a while there I thought we might be looking at a hospital admission. I was worried if it was MRSA that he might have major problems with his leg. But fortunately we got the final culture and sensitivity results back today and it was a staph infection but thank God, not MRSA. Our doc said all it would have taken was a little scratch on the skin and a germ to get in, "kind of like planting a flower by scratching the ground and laying a seed". My only guess is that he somehow scraped his knee (I have thrown a lot of his pants out lately with ripped knees, he's always outside) and picked up something somewhere, God only knows where. So that was a HUGE relief to me today. Once again, we don't always appreciate our good health until there's a problem. So I'm happy his leg will be fine. He's doing great with the antibiotics and right now you can't even tell anything was wrong. My poor little guy.

It's been such a hectic week already. My kids had their school concert today also, and I had to run around and get them various shoes, pants, shirts - they've grown so much lately they're busting out of all their clothes! I was out shopping all day yesterday and finally finished up my cards tonight. Kids had book reports due tomorrow and another due right after XMas vacation which I want to get done before vacation so we don't have to worry about it then. We'll wrap this weekend and then start meal planning for next week. Gotta love the holidays. How are the rest of you doing?

 

[laurabelle]

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

Linda- So that's why you were so quiet! Oh my gosh, you must have been freakin' out! I'm so glad the infection wasn't worse and he responded to the meds. He reminds me of my kids, not complainers, you really have to watch them. It must be a mad rush to get things done up there with the weather that's coming. I hope you all enjoy your snow!

Ann- I hurt with you over your loss. It's tragic, especially leaving behind a child so young...

I think the wedding plans sound wonderful! I'm glad you are able to spring your dad, and hope he is feeling up to staying for everything. You know your mom will be there in spirit. It sounds like a fun gathering at your house on the 26th too! I hope the weather only adds to the festivities!

Carol-Your little escape sounds perfect! Any indications on the report?

No sample meds yet, hopefully today. My nurse said the secretary would call and she didn't. ugh.

I am sure everyone has a full weekend ahead. Fun, hectic, Christmas stuff is good!!!

 

[grammynelliebelle]

GAGWTA!
Well, I picked up my MRIcd and the report as well. Relatively good news, no indications of malignancy. Many, many cysts bilaterally. BUT also noted that MRI is not sensitive to pick up DCIS. Suggestion: repeat mamo in six months.

Now I am really glad I have the apt at Moffitt. I want them to check things over and see if they are in agreement about the six month waiting. If they feel I need the bx of the calcifications and can do it , I will have it done there. That center surely has far more experience than my local community hospital. And another thing, The surgeon has not called me with this info. He doesnt know that I went and got the stuff myself. I realize he may have many more serious things on his plate, but poor communication in my book. He really needs an RN in his office to assist with the getting back to people who are waiting. I will call him Monday if I dont here from him by then.

Atlantic City was fun. We broke even, which is a win in my book and it was a good getaway escape.
Ann, so sorry to hear about your friend. She sounds like she was a very special person. Pea- Glad your son is coming along with his infection. You are so right about appreciating our health. I have been doing some reflection on areas in my life that need to be improved in light of my health concern. Poor food choices and resistance to exercise has caused me to be a good forty pounds more that I should be. There are so many things that we have no contol of, but this is an area where I can make a difference.
Everyone have a good weekend before Christmas. As Laura said.Christmas stuff is good Carol

 

[NHAnn]

Did you ever feel like you just DON'T WANT to have to become educated on yet another medical issue?? Had a checkup with my new PCP Monday, established somewhat of a rapport I guess. He is quite different personality/bedside manner-wise from the other (older,more serious, less demonstrative as far as eye contact). Not in a turn-me-off way though, I was OK with it. He seemed interested and attentive when I talked about the joint issues and the information both anecdotal and written on potential side effects if what I am on in the trial IS Arimidex as opposedto Tamoxifen. He agreed an annual bone-density scan was warranted (last year the imaging center and ins company balked and wanted to wait 2 years). I went this morning for my scan and right before that I stopped at the lab (after fasting last night) for the blood work the PCP ordered. I was caught completely off guard when after getting to work and being at my desk not 20 minutes, the phone rang and it was the PCP saying my blood work was back. (In 2 hours?) Usually you just get a letter in a few days saying the results if they are all normal. Apparently all was good except an elevated TSH....7.02. So he wants to start me on a low dose of thyroid med. It had been at the high end of normal a few years back but I had other fish to fry then ...and had been normal in the interim I guess. He asked if I'd been fatigued and I laughed and said "yes, for 25 years I've been telling my doctors that!" I was still so dumbfounded he was calling right after I left the lab that I couldn't even wrap my mind around it and ask questions.....like WHAT medication are you suggesting....he said he'd mail me a scrip and an order for f/u blood work in 6 weeks to check it again...and I might well see some relief from the fatigue. So, I'll wait for the mail and do some researching and chat with hin again before filling it I think.

Tomorrow we set off (in between snow storms) to Massachusetts for my niece's wedding tomorrow evening in Cohasset. It's snowing here and there right now, upwards of a foot forecast there-a little less here. We'll spending the night and head home Sunday into another storm. Colorado sister landed safely in Boston latethis afternoonand made it safely to her hotel. Hopefully the wedding party and immediate family members have made it safely to the rehearsal tonight

Having this wedding the last weekend before Christmas is really setting me back as far as holiday mealplanning and grocery shopping....but it'll work itself out I'm sure!!

I thought of Maureen today, I saw I vanity license plate that read:
LKNGFWD. I don't know if it meant LookingForward but that's how I interpreted it!!

Grammienellie...those results sound good and I think you are right on track in considering Bx of the calcifications if recommended at Moffitt!!

Still hoping to hear from Gemjoy

GAGWTA...have a nice weekend, I'll check in Sunday night!!

 

[snappy]

What level of synthroid is the presecription for, Ann?

What my doc did was start me off a low level and gradually increased the level over time. There a at least 20 maybe more levels with Synthroid, so I guess this is common. The blood work plus your symptoms will help him figure out where you are. I used to go every 3 months. I could tell when I needed to kick it up a notch because I felt like I had hit a wall with fatigue, It was a very noticable sudden thing.

I would go see him earlier.

I would recommend finding a good endo doc. They seem to be more on the case with the thyroid stuff.

I have wondered about the connection bewtween BC and thyroid.

Wish I knew more.

 

[laurabelle]

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

Ann- I think you are on the right track doing some research first before jumping into the meds. Yes, (agreeing with Laurie) you absolutely should make an appt. with an endocrinologist. This is the dr. who should be handling it, not your PCP. Lots of people just love to think they can pop a pill and everything will be better...you know better than that.

I'm in awe of you New Englanders! You cope so well will such large amounts of snow. Far less than that shuts us down. I'm so glad your sister was able to make it in safely. I think the White Christmas wedding sounds so romantic... I hope we can see some pics. Drive safely!

Carol- That's great news! Yes, I still think you have a very good plan and would feel much more comfortable with the level of experience at the bigger hospital. I'm not surprised that your dr. hasn't gotten back to you yet, especially considering the findings. It will be interesting to see if he agrees with the 6 mo. wait recommendation.

We have been watching Christmas movies as our schedule allows. Last night it was "It's a Wonderful Life". My kids have never seen it from start to finish. Interesting comparing how much things stay the same! The themes are so current. The kids got a kick out of the scenes with the characters at their ages, middle/high school kids. I love all the little details, you really need to watch and pay attention. This is one of my all time favorite movies. I know for years it was so over played, and that's a shame. Terrific messages. Nice to take it out and thoroughly enjoy it.

Christmas cookie making officially begins today! The kids and I are making Haystacks, Cinnamon Sugared Pecans (like they used to sell at Epcot), cookie truffles. Sunday night we'll make popcorn drizzled with dark, milk & white choc., and butterscotch - to give to their friends. I'll mix up the dough for the other cookies- choc. chip, raspberry thumbprints, soft ginger iced with white choc., and peanut butter with Reese's cups, then bake them on Mon. and Tue. Then Wed. morning will be putting together the lasagna and green bean casserole for Christmas day, making crab dip for dinner after church...this is all everyone wants for Christmas Eve dinner, snacks and cookies!

 

[snappy]

I forgot to say how happy I am about your MRI results, Carol. I still like your plans for the second opinion. Glad you enjoyed your getaway.

Ann, sorry about the loss of your support group sista. Sadly, my BIL's cousin Kim who was my sister's best friend for the last 10 years since she married, lost her fight on our snow day a week ago Thursday. I have not felt up to posting about this before.

She was able to get off the respirator, then needed to be back on. She decided she did not want to live that way, took it off. She was able to "taste" snow that morning. In our neck of the woods having that much snow was a true miracle. Her living and giving to all was a miracle as well. Pleae pray for Kim and her husband Dale.

It was hard to lose her but against all odds she lived for 12 years after a prognosis of 6 months to live when diagnosed with stage 4 cancer. The chemo kept her alive. She went on every new course of treatment available, her doctor was very agressive, and she was willing and was able to work. In fact, she was able to get her time in to retire with the state so Dale now has insurance coverage (he has his own small business).

A truly beautiful person who helped me realize alot about priorities

She and her husband made it to one of the casinos on the gulf coast several weeks before her passing. Going to the coast casinos was one of her passions, one they shared. She had to gamble in a wheelchair but she managed.

Sorry to post a downer but her life was a testament to winning and what good medical care can achieve.

So there is hope for all here that are facing this. Fight ON!!!!!

 

[luvmarypoppins]

Thanks for sharing that. I told the dr. yest. I am a fighter and he said that is good since alot of it is having the right mental attitude.

 

[snappy]

Thanks for sharing that. I told the dr. yest. I am a fighter and he said that is good since alot of it is having the right mental attitude.

I appreciate that you posted that as I truly worry about posting things like this since it could be viewd as discouraging to anyone just starting this journey. I can tell you that cancer did not stop Kim from living large. She held these huge Christmas parties each year that were events and showered her own brand of pixie dust on everyone young and old.

I am glad you have the attitude you have and I am glad you have a doc who seems to motivate you even more. He sounds like a keeper. Kim had the same oncologist for 12 years. They were very close. He was the one who had to give her the info she needed to get off the ventilator that last day. He helped her live those 12 years and then he told her it was time to let go.

Sorry to spill my guts here, but you old timers know me. I am chatty Kathy.

 

[Pea-n-Me]

I'm sorry about your friend, Laurie. Love the visual in the casino. Will keep all three of these ladies and their families in my prayers this week. Once again, such a hard time of year to lose someone.

luvmarypoppins, it is good to have a strong, fighting attitude. And it's also good to have a nice cry now and then if you need to, too. Going through something like this you can have a wide range of emotions, and everyone copes a little differently. You're doing great.

grammy, I think you're wise to go to the other center, too. Second opinions are always good, especially from a major center. Reassuring about the MRI results, but as you say, they may not pick up DCIS so it behooves you to take care of that now if it's there. You go girl. Glad you had fun in Atlantic City. I actually spent A LOT of time there as a child and would like to take my DH and kids there sometime. I realize it's changed a lot - I used to go before the casinos came to town. I actually looked into booking a short trip down there earlier this year and was a little disappointed at how "scary" some of the off-boardwalk hotels were reported to be, and how expensive the on-boardwalk hotels were. Not like I remember. Do you mind sharing where you stayed and what it was like?

Laura, the cookies sound yummy. We did some last night, too. We wound up with 13 inches of snow and had a houseful of neighborhood kids here doing the Wi so they enjoyed some fresh baked stuff hot from the oven and we made some to take to a party tonight. Yup, we don't usually let a little snow slow us down around here.

Lasagna sounds good. I'm going to do a brunch XMas morning so I'm thinking of what to have that's fairly simple. I was thinking about doing a creamy onion chowder, a spiral ham, a baked egg w/onions, peppers, tomato dish (kind of like an omelete in a pan), a brocolli "pie", and either some warm cinnamon buns or a pull-apart monkey bread. We decided to do it early for traffic considerations and also so we can have some time to ourselves later in the day. We go to DH's family's house for XMas Eve, I think I'm going to make a second broccolli pie for there as I'm supposed to bring a vegetable dish. This one I've never made (maybe that's not such a good idea ) but my nextdoor neighbor makes it to bring everywhere and says people love it. The other thing I could do is a baked butternut squash dish with carmelized onions and cranberries. Where are all of you going and what are you making?

 

[snappy]

We celebrate my brother Tom's 40th birthday tomorrow. His birthday was Dec 2 and we were supposed to all be in Vegas but Mom's surgeries postponed that for awhile.

We are having some gourmet grilled steak, birthday cake from our favorite bakery.

Christmas eve we do the turkey and oyster dressing at mom's house, with seafood gumbo for a starter.
We are making ti simple this year.

Christmas day will be my husband's entire family (his mom, his brothers and sisters and their kids and grandkids). We are celebrating the first Christmas in his mom's house rebuilt after the Katrina.

I called late for my assignment so I got the bread and a broccoli dish.

Linda, can I get that broccoli pie recipe? I think I am basically supposed to do steamed broccoli with an olive oil and garlic dressing (heart freindly for my SIL Claudette, but I would love to bring something else that others would also enjoy.

I am officially no longer the scrooge of the house. Bought a live tree, it is up and has been lighted. When DD13 gets home from her soccer game we will finish decorating it.

She is happy as a Christmas tree was the one thing she really wanted on her list (she guilted me).

I have to admit it looks more festive around here. We are foregoing the outside lights but I have greenery now on the mantel

 

[Pea-n-Me]

Ooh, the live tree must smell really nice, Laurie.

As I said, I can't yet vouch for this recipe, but here it is. She says it's always a request when she goes places. I just called my neighbor to make sure I got it right.

Buy broccoli spears (fresh or frozen) and steam them. If they're extra big you can slice them lengthwise. Make two layers of broccoli and sour cream beginning with the broccoli and ending with the sour cream (low fat is OK). For the topping, make a mixture of plain bread crumbs or Corn Flake Crumbs and melted butter - use as much as you like, to cover. Then bake to heat through, around 20-30 minutes. Amount of ingredients depends on the size of the pan you're using.

Your garlic and oil broccoli sounds good also.

 

[snappy]

Yeah, my family tells me it smells good.


I still do not have got my sense of smell back and my sense of taste is marginal.

Got the ornaments on, and it looks good. I thought we would have to put it on the kitchen island to keep our puppy Naj from having a field day so I had the tree guy chop a good bit off.

We decided to try it on the floor after all, so the tree only sits 5-6 feet tall. But it is humongously round and takes up most of the area in front of my kitchen bay window. And with all the branches he cut off, I ended up with lots of greenery for my mantel and for the porch. I just miss my outside lights but DH is just too worn out to do that. At least we have lots of lights in the neighborhood so I am enjoying looking at them all.

So far Naj has selected only one ornament for VIP treatment. . . a Pinnochio ornament.

I just knew she was a Disney dog.

Can't wait to see my brother Tom, we are waiting to hear when he gets to town in his rental car from New Orleans. I think his flight from NYC has touched down. He brought his puppy Marlena so we are anxious to introduce her to Naj.

We shall see how THAT goes.

Thanks for the recipe, Linda. Sounds yummy. I am working tomorrow so I'll go buy the Walmart and pick up the ingredients.

Had to run the air conditioning yesterday due to the heat and humidity. Today it is colder and man is the wind blowing. Night and day from yesterday although we still don't need heat. I am glad, maybe our tree will last longer.

Bonus for buying the tree late: the Price!!!!!

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Just popping in to say hello! I hope everyone is well!

Laurie - Glad you went ahead and got a tree. Good luck with the pup! The cat has really ramped up her tree climbing since we put presents under the tree over the weekend. They gave her just the boost she needed to be able to scale the branches. Stupid cat.

Linda - DH found a battery for his camera at Circuit City over the weekend for $10, marked down from $53. I *think* it is for the Oly, but it might be for the Sony.

Ann - Good luck getting the thyroid balanced!

Mom found out the fabulous new radiation machine (IMRT) at her hospital is not approved for treatment of BC by her insurance, so they had her sign a form saying she will pay for the treatment! I really hope the radiation onc can convince the insurance to cover it. She had another appointment today, but I haven't heard from her.

 

[luvmarypoppins]

GAGWTA to the ladies on this thread

I am tired of the medical run around today. All I have been doing is be on the phone all day. I have to watch what I say because my youngest ds is around and dh and I have decided they dont have to know everything yet. Mostly stuff we learned on friday that I just dont feel like discussing yet, its the holidays and I am trying to be positive in the midst of all of this.

I am tired to talking to drs. offices etc. all day. Its hard since I go between the hospital, drs. offices, nurse practioners, appt, people, surgery people etc. Gosh, its never ending. After a few hours today I finally got an appt. with a endocronologist for March 4th!!! Wow, the np at the surgeon said it was o.k. This is a female and I guess she is pretty popular. They were going to give me some guy in Jan. I only said no because I told them the dates might interfere with the post op stuff etc. And they told me once I get one dr. I cant change etc. I dont like their rules for sure. So I am holding out for this dr. They said she also does biopsies if I need the R lymph nodes done in the future. The np said they might even get her to see me in the hospital if they see their is a great need and I am on the wait list for the regular office if there is a cancellation.

My other venture of the day was trying to see if they are paying for this nerve monitoring procedure on my neck and back in the operating room. When last I heard, they dont know me at the eeg place, they left a message with my surgeons ofrfice and they dont know if its covered under my insurance, they told me I could call hospital billing but they dont know the number to give me and suggested I call my ins. to see if the icd codes they gave me are covered procedures. Oh the joy, I think I will ask dh to call the ins. co tomm. My voice was almost gone. One lady said, I cant hear you. I said of course you cant, the tumor is crushing my trachea!! Gheesh. One lady was nice and said she is also a thyroid cancer survivor. Nice to hear the positive stuff. I need that now. I told her my case is " a little out of the box right now" , I couldnt explain with the ds there I told her. I dont know how much the dr. wrote in the paperwork she had,

I wish you all a blessed holiday season.

 

[grammynelliebelle]

Luvmarypoppins- a big hug goes out to you! All of the running around really wears on you doesn't it. Add that to the worry and uncertainty and concerns about keeping things under wraps for now. Plus the holiday season. I send you a prayer for peace and rest. To all of the other ladies, the same. GAGWTA. Carol (Grammynelliebelle)