Dis Breast Cancer Survivors Part II -GAGWTA!

[NHAnn]

GAGWTA!
Saw my surgeon at the Breast Care Ctr for checkup Thurs and also chatted with her NP while I was there. My mamm results were fine and my exam was great. Talked a lot about the pains in wrists, feet, and random other places, also the thyroid and bone density issues. Surgeon is going to send a note over to onc (who I see early Feb)...she thinks I could consider dropping out of the trial and and doing 18 months of Tamoxifen or Evista. They could have the same postive impact on risk reduction without the joint pain. She also wants me to discuss bone density drugs in depth with him as Tamox and Evista can actually improve bones. Though they of course are not without their own potential risks/side effects. I am so not in the mood to deal w/the decision making and research, though I know a lot of my attitude is just "winter blahs". SO I've decided that the winter blues/cabin fever has to be fixed before I can get a handle on the medical stuff. sooooo....
.....drum roll please.....we're going to Disney!! 6 nights at the Dolphin leaving the day after my onc appt. Just me and DH! I hesitated in this economy but he insisted, (he needs a break too) we considered a more beachy/Caribbean type thing but Disney is so familiar and comfortable for a last minute thing, and we can get a good room rate. I have an AP still, he has days on an old MYW pass and we also have old hoppers with water park days on them. Also he wants to do a day at Sea World, we haven't been in years. I'm looking forward time to relax with DH, refresh my brain and body to come to some decisions on the medical stuff..

Alice,my experience with radiation fatigue was that it was a slow buildup of deep weariness over my 5 week treatment. I too had my appt around 3...I'd go home some days and stare into space at the dinner table - sometimes too tired to feel like eating. It was summer ....and DH loves to grill so that was a saving grace..meat,chicken or fish on the grill, frozen or fresh veggies and salads were the mainstays. Breakfast for dinner at least once a week...DH makes a mean omelette or pancakes. This time of year, use your crock pot if you have one!!

LMP, I am keeping you in my thoughts, and JSG's mother too!

It is soooo cold here....it was 22 below zero yesterday morning when we got up for work..."freeze your nostril hairs" cold!! brrrrrrrrrrr It's a balmy 4 above right now


Hope you all have a good weekend!

 

[lookingforward]

Hi everyone. I am trying to catch up on all the posts, so forgive me if I miss a few things. I am really under the gun to finish one of my graduate classes that I took an incomplete on when I was in the hospital in November. I only have three days to write three papers. I do, however, work better under pressure.

Radiation was tiring for me too. Not at first, but after about two weeks I grew weary. I went first thing in the morning and then went right to work. My skin did okay until the end, then got a bit red and sore. Overall, not that bad, but the everyday factor of the treatment is tough.

I am scheduled for my final plastic surgery(i hope). Its to add the crowing touches to my implants (if you get my drift!). The day surgery is two hours (one for each breast! ). One of the women at my docs office was saying that she is afraid of the final surgeryand asked if I was.... I said..."I survived two mastectomies, four port surgeries, two blood clots, an expander in for eleven months, six TAC chemos, 35 radiation treatments, two plastic surgeries, a post-surgical infection and hospitalization all while I was working full time....so I know that I can do the final two hour ordeal." It was not until then that I realized how much crap I have been through and how strong we all are. I think we forget the really hard times because we are challenged to focus on the here and now when still in treatment. I felt so empowered when I actually spoke out about what I have endured and lived through. Kind of like no matter what happens I can deal with it. It was a revelation for me, really. I can kick a**. We are amazing!

Gosh, I hope I don't sound conceited...I am just proud of what we all do and how hard we fight for our health.

We are headed to disney the last weekend of January. One night at the boardwalk dvc villas and then two nights in the fam ily suite at all-stars. This time my husband is coming with us so everything will be much easier for me (no driving, schlepping, etc). We are going to take it really easy. He is getting a five day park hopper for free since he is retired military. We were going to do a June trip but decided to wait until December since they still have amazing rates through the end of the year. I have about no vacation time left at work after the last year of my life.

I hope everyone is doing well in this crazy weather. Although it is relative, it is even cold here in south Florida. Sweater weather, even coats at night. Unusual for it to be so cold for so long. My best college friend is headed to DC for the inaugeration (sp?) from southern california. I told her it is about 0 degrees there, they are telling her that she should prepare for 20 hours in the cold as there will be limited shelters and bathroom facilities and long delays in transportation. She is actually packing nuts, berries and thermal blankets to keep her water bottle from freezing. Now that is dedication!

My thoughts are with you all, as always!

GAGWTA!

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Aliceacc - I am glad the rads are off to an OK start! You are 5 doses ahead of my mom.

Ann - Glad to hear your mammo was fine! YAY for a WDW trip!! There is no way I could function in temps that cold. Holy cow! I hope you guys are staying warm!

Maureen - You have EVERY right to be proud of everything you have endured! You don't sound boastful at all! You sound like a survivor, and you inspire girls like me who may be facing similar challenges in the future. I hope your finishing touches are fabulous!
YAY for your trip to WDW, too!!
It would be exciting to go tot he inauguration, but it would be so cold and crowded that I would be miserable the whole time. I will watch it on TV!

 

[annrae]

Hi to all of you who are undergoing testing at this time and to all of you who are in treatment. I've been away for a few days and did not have access to a computer so I'm a little behind. So happy for all of you who are planning trips - Ann, Laurie, Laura and anyone I've missed. I hope your son is beginning to feel a bit better Laurie -

We just returned from WDW after 5 wonderful days. We went with our DDIL and DS so our DDIL could get her Marathon shirt as she did not run the Marathon as planned because of their upcoming baby girl (March). She said it is now the most expensive t-shirt she will ever own as her registration fee could not be refunded. We rented a car for the first time and that worked out well as we stayed at the Saratoga. One day we visited the Kennedy Space Center and another day we went to Celebration - a lovely small community. There were too many birds though and one decided he liked my DH so you can guess what happened!! It took me 15 minutes to scrub his shirt and get the stain out!! We really had a good laugh though. The rest of the time was spent in the parks, going to Epcot, Downtown Disney and having dinner at Narcoosie's where we watched Wishes and had a great view of the castle.

I found out that the earlier you rent a car the cheaper it is - we rented through Alamo and it was $165 for 5 days and we drove a 2009 HHR. I made the reservation in November. Weather was warm for two days and chilly for the rest of the time but bearable.

It was a great trip with many funny moments and just being at Disney made us all feel like pixie dust was all around us.

I thought of all of you and hoped some of that magic was reaching out to you. I am so sorry for all of you who are traveling rough and sad roads at the moment. Let's all hang in there. Hugs, Barbara

 

[jackskellingtonsgirl]

Barbara - Your poor DH! A bird pooped on my head in Frontierland when we went in early Feb. one year. I am afraid of birds to begin with, and now I like them even less!

 

[snappy]

Barbara, I am glad you had such a great time on your trip.
How was Saratoga?

Sounds wonderful eating and watching wishes.

Thanks for asking about my son. He seems to be doing fine. He is still fiddling with his schedule. He likes being in the apartment, and likes his roommate.

He is actually in town today. His car door would not close last weekend, and DH figured out how to fix some mechanism but ran out of time to put the door panel back in. So he came in tonight so DH could finish the job. He also wants to change out the speakers while everything is out so they went to Best Buy.

DH and I made a huge platter of his favorite meat. . . the panne veal dish.

I am a lot more calm compared to last weekend.

DD18 has sorority rush at Tulane for the next few days. So we have not heard much from her today.

She is looking for a job as she wants to earn money for a trip to Trinidad where her roommates' grandmother lives. A bunch of the girls in their dorm want to go and we told DD she had to earn the money for the plane fair and expenses.

Time to grow up, baby.

 

[annrae]

Saratoga Springs was very nice, Laurie - really a huge resort though. Every night I had to stop and really think about where I was "living" as the buildings are all so similar. We usually stay at the Boardwalk so we found Saratoga a little out of the way if we wanted to return during the afternoon for some down time. For that reason we stayed in the parks for the entire day other than going to the Poly and Floridian and sitting in the lobby to catch our breath. We did go through the Animal Kingdom and Bay Lake DVC models and they are absolutely lovely. I personally liked the Animal Kingdom DVC layout better, especially the one bedroom. Bay Lake is very contemporary ?? and a bit cold looking to me. I guess it is all personal preference. They will let anyone go through the models so if you are at WDW it might be fun to take a trip to the Saratoga.

Have a good weekend everyone. Hugs, Barbara JKS -- better shirt than head I guess!!

 

[jackskellingtonsgirl]

Babara - It was gross. I had to go in the restroom and try to clean the bird poo out of my hair with paper towels. DH was no help because he was laughing too hard to be of any use.

Laurie - We liked Saratoga more than we thought we would. Of course AKV is our favorite.

 

[luvmarypoppins]

GTAGWTA Good Evening Ladies Is there a freezing smilie???

Well I think its like 13 here. I am jealous of all of you who are going to Disney soon, warm jealous, sunshine jealous!!! O>K. I will be warm through your post trip reports!!

Ann - so glad your mamo results were good. I think you win the popsicle cold award. I dont think I would do well in those temps. My warm hat off to you.

Maureen - You SHOULD be very proud of yourself. Your story is very inspiring.

Laurie - You are quite the cook, actually sounds more like a chef with your wonderful creations. I hope your ds is recovering emotionally from what he has been through.

Elizabeth - Does your mom live in Dallas too? I hope things work out and she wont have to move. I know its hard when you have bad neighbors. They can make your life miserable and your mom sure does not need to worry about things like that right now.

Well I didnt do much today, just go to church and do some laundry. My breathing sounds terrible. Even the ds commented on it. DH says it sounds like this commercial on tv around here, aliceacc would know what one I am talking about, the lung cancer one. Yes here in NY they show you really shocking commercials to get you to quit smoking. One was of a guy cleaning his trach tube out in his bathroom once. Nothing like in your face kind of stuff, gheesh.

My dh is going to call the np and discuss stuff about the biopsy. Still dh thinks as do I if they dont do it sooner than that date then there is no point etc. Also I asked a nurse at my church and she said the same thing, only based on the date. She is a breast cancer survivor too. Sweet lady.
Dh is also going to tell them how my breathing stinks etc. Dh is leaving for California on friday so I am getting a little anxious. I fell asleep in church today, Gheesh, No I rarely ever do that, but I think it has to do with the strong BP med. That is why I havent even driven by myself yet because I am seeing how my body adjusts to it etc. Going to do a little shopping with dh tomm.

 

[Pea-n-Me]

lmp, what is going on with your breathing? Can you describe it for me? What is the name of the medication you're on?

I re-read your post on the biopsy.

Well in the cancer coaster of my life today I talked to the surgeon, briefly. I didnt even ask to speak to him. He wants to do the core biopsy before surgery to know what he is dealing with. I booked it for Feb. 8th!!! The lst available opening.

After I hung up in the mail was a letter from the ins. co.,saying the surgery was approved for feb. 12th, so nice no one from the surgeons office bothered to tell me that. Well I thought about it and will call them next week and say no to the biopsy.Its ridiculous since they said it will take 2 days to get back and that is the day of the surgery. They dont care that I have to wait almost another whole month for the surgery so he can wait till the real biopsy to see what it is etc. Why torture me anymore and stress me out,they have done enough of that already.

Oh and he says now they are back on the meduallary thing. I am not even going to get into that with him until I speak to the endo when she gives me the newest test results. He did mnake a comment on something like, oh your body is doing what IT wants to do etc. ??? I told the surgeon to have a nice week end. I dont want to annoy him too much since he is going to be cutting me apart for 6-8 hours and if it goes to the other lymph nodes in the future he will do that too and do alot of follow up. Well if it really is that, then it wont be chemo and only external radiation.

I don't see that you have an option to not do it. They need all the data so they can know what they're dealing with. For instance, is it thyroid, or not? If so, is it medullary, or another type. Is it lymphoma, or not? All of these have different treatment modalities. They can't go forward until they have all the data. You wouldn't want them to. I would think if the surgeon did not have the biopsy results before the 12th, he might need to postpone; or possibly they can get the results to him quickly. I definitely wouldn't let the insurance approval for a particular date drive the decisions I made - if it was approved on the 12th, I'm sure it will be approved on the 16th also. The important thing is that it was approved.

Remember, your surgeon also told you this.

I told him about my pain, he said its not good and the breathing and just to go to the ER if it gets worse.

Dh is also going to tell them how my breathing stinks etc. Dh is leaving for California on friday so I am getting a little anxious. I fell asleep in church today, Gheesh, No I rarely ever do that, but I think it has to do with the strong BP med. That is why I havent even driven

Sometimes with breathing problems, if your air exchange is impaired, your carbon dioxide levels can rise. This can cause sleepiness and/or altered consciousness. A blood gas reading can tell if that's the case. If there is any doubt, you should take your surgeon's advice here and go to the ER before it gets much worse. Maybe you should show this to your husband.

 

[snappy]

We saw the models in October.
I really enjoyed doing that, I think they had just opened the Bay Lake one. It looked nice but DH and I wonder how the Bay lake one will hold up with heavy usage that DVC gets.

Saratoga Springs was very nice, Laurie - really a huge resort though. Every night I had to stop and really think about where I was "living" as the buildings are all so similar. We usually stay at the Boardwalk so we found Saratoga a little out of the way if we wanted to return during the afternoon for some down time. For that reason we stayed in the parks for the entire day other than going to the Poly and Floridian and sitting in the lobby to catch our breath. We did go through the Animal Kingdom and Bay Lake DVC models and they are absolutely lovely. I personally liked the Animal Kingdom DVC layout better, especially the one bedroom. Bay Lake is very contemporary ?? and a bit cold looking to me. I guess it is all personal preference. They will let anyone go through the models so if you are at WDW it might be fun to take a trip to the Saratoga.

 

[snappy]

luvmarypoppins, and everyone, thanks for asking about DS. He is plowing full steam ahead with school, taking 18 hours this semester. He really seems to have come to the place where he appreciates the opportunity to go to school. He seems to be taking it all more seriously. I hope he stays focused.

luvmarypoppins, are you sleeping at night? Not sleeping much at night really made my DH very tired all day before he started with the c-Pap mahcine in 2003. The trouble with breathing you are having has got to affect the oxygen content in your blood, and based on DH's experience, that also contributes to the tiredness big time.

Hugs to you dear, I can understand why you are worried about your husband going out of town. Is your DS of driving age?

 

[luvmarypoppins]

lmp, what is going on with your breathing? Can you describe it for me? What is the name of the medication you're on?

Linda,
My breathing sounds like when the ds is having asthma wheezing. Raspy. It also causes me to have a hoarse voice sometimes too.

The dr./surgeon already knows the thyroid/tumor itself is crushing my trachea, I also posted that I told him it sometimes hurts my breastbone when I am breathing and he said that is not good. If I went to the er I honestly dont know what they would do, trach me? I can still breathe, it just sounds bad and I try to barely exert myself, but I dont know how this is going to make it for another 25 days, only by the Grace of God will that happen.

The medicine is an alpha blocker, dibenzyline. This is to keep the blood flowing and not constricting the blood vessels when they do the anesthesia.

 

[Pea-n-Me]

Linda,
My breathing sounds like when the ds is having asthma wheezing. Raspy. It also causes me to have a hoarse voice sometimes too.

The dr./surgeon already knows the thyroid/tumor itself is crushing my trachea, I also posted that I told him it sometimes hurts my breastbone when I am breathing and he said that is not good. If I went to the er I honestly dont know what they would do, trach me? I can still breathe, it just sounds bad and I try to barely exert myself, but I dont know how this is going to make it for another 25 days, only by the Grace of God will that happen.

The medicine is an alpha blocker, dibenzyline. This is to keep the blood flowing and not constricting the blood vessels when they do the anesthesia.

They would at minimum give you supplemental oxygen so your blood gases do not become impaired, possibly nebulizers if you're wheezy or rhonchorous, and probably IV steroids to decrease any inflammation around your neck to ease your breathing. They would also surely admit you if your breathing is impaired to monitor your sats and such. They would probably do the biopsy and surgery from there. I know that' s not what you want to hear or want to do, but if you are in distress, you should consider going.

PS there can also be things like dehydration if you haven't been feeling well, losing weight, etc, and possibly hypotension (low BP) in light of the alpha blocker which could also contribute to altered blood gases if not enough oxygen can be picked up in the lungs and circulated correctly. They would look at all of this with you.

 

[luvmarypoppins]

I dont think there is an actual inflammation, its the actual tissue itself that is there. DH said he saw the pet scan, he was looking over the doctors shoulder at it and he said it looks like its sitting right on my trachea,

I dont know how the oxygen would work out. I have septum problems too which he discovered in his lovely lets shove the camera up the nose and down into the vocal cords.

I know when I was in the hospital in sept. and got the 4 blood transfusions that my breathing was really short of breathe and actually this is not as bad, just different and strange, during that time before I went to the hosp. I was waking up telling dh I had no oxygen to breath. So I know what that is to look out for now. I am not feeling like that. I can breathe, its just hard and it sounds bad. Do this make any sense??

The dr. did tell dh before that his only game plan was to "just get this thing out of me" and then we would take it from there. So I dont know what the dr. is thinking now. Dh said he wants to talk to him. He honestly likes my dh since he knows where he works and talks to him on a more scientific level.

My hearts desire would be for them to push up the biopsy date, that could mean 1 of the ds being with me. The oldest 2 are 21 and 19 so they can help around their college and work schedules. My head spins. I would rather have ds 19 with me because when ds21 saw me in the hosp. with the blood transfusion going he ran out the room crying. He is just too much of an emotional person. The other ds has been through alot himself so he can deal with it much better.

Say some prayers that this will get worked out.

 

[snappy]

Prayers said, luvmarypoppins.

 

[Sha]

Lots of prayers here luvmarypoppins. Im a little uneasy about your breathing, but you know your body and how it sounds and feels in regards to breathing.

 

[Pea-n-Me]

I dont think there is an actual inflammation, its the actual tissue itself that is there. DH said he saw the pet scan, he was looking over the doctors shoulder at it and he said it looks like its sitting right on my trachea

With these types of things there is often inflammation around the tissue as well.

I dont know how the oxygen would work out. I have septum problems too which he discovered in his lovely lets shove the camera up the nose and down into the vocal cords.

It would be fine. It can be delivered by mask or nasal prongs which only sit in the beginning of the nostril. It goes in the same way all air does.

I know when I was in the hospital in sept. and got the 4 blood transfusions that my breathing was really short of breathe and actually this is not as bad, just different and strange, during that time before I went to the hosp. I was waking up telling dh I had no oxygen to breath. So I know what that is to look out for now. I am not feeling like that. I can breathe, its just hard and it sounds bad. Do this make any sense??

I don't know what happened in September, what was causing your breathing problems or anemia then. But different problems can cause different symptoms. There are lots of reasons why someone can be in respiratory distress. Right now, a tumor pressing on the trachea is definitely concerning for your upper airway, and it sounds like there could be something going on in the lungs themselves if you're feeling wheezy-like also with discomfort in your sternum. Another thing they would do is a chest xray and possibly a chest CT to define exactly what's going on.

The dr. did tell dh before that his only game plan was to "just get this thing out of me" and then we would take it from there. So I dont know what the dr. is thinking now. Dh said he wants to talk to him. He honestly likes my dh since he knows where he works and talks to him on a more scientific level.

My hearts desire would be for them to push up the biopsy date, that could mean 1 of the ds being with me. The oldest 2 are 21 and 19 so they can help around their college and work schedules. My head spins. I would rather have ds 19 with me because when ds21 saw me in the hosp. with the blood transfusion going he ran out the room crying. He is just too much of an emotional person. The other ds has been through alot himself so he can deal with it much better.

I'm sure this would happen if you were in the hospital. They would probably move up the surgery to this week, and possibly do the biopsy at the same time. I think the previous plan would only be if you were stable and comfortable until February.

Say some prayers that this will get worked out.

You have been and will continue to be in my prayers.

Your doctor must be on call or have someone covering, if not. I wouldn't hesitate to give them a call tonight for advice.

 

[Sha]

Your doctor must be on call or have someone covering, if not. I wouldn't hesitate to give them a call tonight for advice.

 

[jackskellingtonsgirl]

Luvmarypoppins - Sending you more good thoughts! I agree with Linda that a call to the Dr. can't hurt.

My mom lives in Kansas. She used to live in Dallas, but she moved in 2006. She grew up in Kansas and her sister lives there. She lived with her sister for awhile so she could get sorted out after my father died, now she has an apartment.