Dis Breast Cancer Survivors Part IV - GAGWTA

[Dancind]

Cheryl , thanks for the memories. DH has still not gone through photos for that trip. We stopped at the same place for lunch in Big Sur, with the cabins perched on the side of the cliff! Did not get to stop in Carmel, we went through on the Monday of a holiday weekend (poor planning) and found no parking anywhere.

I am sorry to hear about your upcoming treatments.

A friend was telling me about a friend of his, a very athletic guy. He had mets on his lungs from another type of cancer. He went to Germany, they opened him up and lasered the spots on his lungs. No chemo, and he's doing great. I guess it would help to be wealthy.

Linda, hope things are better for you and your kids are doing well.

DD and I were just talking last night about making a trip to San Francisco next fall. It's a bit scary without DH, but he is going to Cozumel to scuba dive and I think I should get a trip too!

 

[snappy]

San francisco sounds like a winner, Dancid!

Busy here today planning a visit with my brother to New Orleans next month. I think we just found the perfect hotel.

Hope I am right. He is coming down with his sigñificant other who has never been to New Orleans.

I want it to be special.

Trip planning is grand, isn't it?

 

[CherylDan]

Dancind, I say plan away! Like Laurie said, trip planning is the best!

Laurie, I'm sure your brother and his SO are in for a great visit!

LMP, take care of yourself........hopefully your leg will be feeling better soon.

Just wanted to say thanks for all the well wishes. I see the other oncologist on Monday. He is about an hour or so away, in one of the bigger Chicago area cancer centers. I'm not so sure I'm really very interested in this procedure, but hopefully after meeting with him I will better understand just what it is all about.

Ikea delivered the cabinet parts today to the condo....oh boy, such a big pile of boxes! Starting to wonder what we've gotten ourselves in to!

GAGWTA!!

 

[Pea-n-Me]

Thank you everyone for the good thoughts. The patients are doing well and my girl is hanging in.

DS had a knee injury from fall baseball. One night he was getting into bed and he heard a pop - all of a sudden it was swollen and painful, and that launched the whole orthopedic scene with him. (You all know the drill - ER, numerous ortho appts, crutches, braces, ice bags, meds, etc.) Anyway, MRI showed a tear to his meniscus. You can imagine how bummed he was. But fortunately when the surgeon went in with the scope, the meniscus was intact and there was only a soft tissue injury. So no repair was necessary and his recovery will be shorter. He will get to play ball again and not miss any of his seasons. (Fingers crossed.) He still has to do PT. But thankfully we got to ship the CPM machine (i.e. post op passive motion machine) and the braces back unused. He is now off crutches and going back to work today.

And you will not believe the irony, but DD had a breast reduction. Yes, at 16. I always knew it was on the horizon. Physically she was in a lot of pain, back and neck cracking, walking hunched over, unable to run, etc., and having a lot of other associated difficulties. But the latest thinking is that there is little reason to wait; that the benefit of relieving some of the physical and emotional distress in late adolescence outweighs the downside of the little bit of additional growth that might occur until 20 or so. So fortunate our doctors understood that. (And insurance companies are getting the idea, also, it's considered corrective surgery when it's causing physical problems so most of the time the surgery is covered.) It wasn't easy for her, but she never wavered and I was in awe of her strength in making the decision, going through with it and recovering from it. (I can't tell you how many people I've met who said they wanted to have it done but "chickened out", even adults.) Her back hasn't cracked since the surgery, and she feels so much better. She chose Christmas vacation so she'll be all recovered by summer. (Total recovery time is 3 to 4 months.) So glad it's behind us now. (And oh, yeah, I was a wreck during both surgeries. Got the news about DS while I was sleeping in Boston where I had to stay between shifts during that little blizzard we had last week. DH had to handle that one and I hated not being there. But with so many appointments and what not, we really had to tag team who could do what and when. It was nuts. I will say, though, I will never not be there for another surgery again. It was agonizing for me not being part of the process and feeling like I didn't know what was going on. OCD when it comes to that stuff, I guess, lol.)

Cheryl, lovely pictures! They bring back a lot of memories of being in the area for my sister's wedding way back when. I'll never forget the day we went to Muir Woods and my mother wore high heels. Classic Mom. Needless to say, it slowed us down a bit. I would really love to visit again someday - it's on my list. Thanks for sharing pics.

We have IKEA cabinets and my husband put them up. We used a design company that works exclusively with IKEA, and they sent a guy in to help us for a day to get us started. (DH studied cabinetry in school and even he was a little perplexed at first, but got it no problem once he was shown how it works.) We will be putting them up in our in-law apt sometime this year, too. If you have any questions, I'm sure DH might be able to talk you through it. I also know a little bit about intra peritoneal chemo, as I know someone who's had it a couple of times. Insurance coverage I think was the biggest problem, but eventually they did get coverage. Your doctor seems like he's really on top of things, which is great. We are so fortunate to have these types of options.

 

[Pea-n-Me]

LMP, what is going on with your leg?

 

[CherylDan]

Linda, so happy to hear that your kids are recovering nicely! What a crazy time in your household to have all that going on at once. Sounds like your DD is quite the mature 16 yr old, to know what is best for herself like that. Congrats to her! . Glad to hear that she can already notice a difference.

So nice of you to offer help with the cabinets. So far, it's going along really well. DH got all the frames put together today, and everything trial fitted. They need some adjusting before tightening everything up, but so far so good! I hope the rest of the steps go as well.

Too funny about your mom in heels at Muir Woods!

I'd love to hear what you have to say about that procedure. The reason I am so unsure of it all is because my oncologist was not very detailed in describing it, instead saying that he would prefer to let the other doc talk to us about it in depth. OK, sounded reasonable enough at the time. Then on the way out of the oncology center I was talking to my nurse about it, and she mentioned that she'd done it before where she used to work, and basically summed it up the same way, adding that it took a few hours and was outpatient. OK, sounds fine.

When I got home I decided to google the oncologist to find out about him, and it turns out that he is a pretty big deal, and that the procedure he does is fairly rare, and VERY involved. I even found a video of him briefly explaining it.


http://www.hipectreatment.com/video...ti-md-surgical-oncology-edward-cancer-center/

Sorry to ramble on, I'm just trying to figure out what exactly I'm being evaluated for. Seems to be at least two different possibilities.

 

[Feralpeg]

Cheryl, Thank you for posting the pictures of your trip. They are beautiful. It makes me want to go somewhere! lol.

So much going on in everyone's lives. It's hard to keep up. Things are fairly quiet here. Kendall started her journalism classes. Par for the course, two of her classes were canceled the first day...not enough enrollment. She had to scramble to find others. She ended up getting a place on the school online newspaper. She didn't think she was eligible due to a pre-req. She talked to the professor in charge and he was impressed that she already has a BA and a masters and that she's written quite a bit and was a news anchor on that kids program she was a part of several years ago. She's the only one he has that has had prior experience working with a green screen and teleprompter. She's working part time at Huntington Learning in addition to her classes, so she's going to be busy. She already told me she's dragging me to the Central Florida Scottish Festival so she can cover it for the paper. No problem. I'll just sit and watch the bands while she does whatever.

Hopefully, I'll feel better by then. I managed to catch a cold. I don't feel terrible, but not great either. I see my GP on Tuesday so I can get my refill prescription for Crestor. She always does fasting blood work. Last time, she said my thyroid results were off (not sure which way). She wasn't terribly concerned because I had just finished the chemo. It will be interesting to see how it is now.

Hope the weather is improving for those of you who've been enduring the terrible cold and snow. The weather here is nuts. One day, it's cold (by Florida standards). The next day, it's back in the 80s. Hard to handle these extreme swings. I saw a t-shirt on someone the other day. It had a map of Florida on the front with a caption saying "I survived Florida's 2 day winter". So true!

Hang in there, ladies. Thinking of you all!

 

[luvmarypoppins]

Cheryl - Hoping your visit went well yest with the new onc. and that he answered and explained things to you. Wishing you all the best.

Peg - sounds like the classes are something Kendall would really enjoy. I know oldest ds has a friend who is doing sports broadcasting journalism. He loves it. He also got to interview Kirk Cameron for his college.

Well last night I went to the grocery store with dh. My L leg is fine but then my R leg was terrible. So terrible I went home and took some leftover painkillers I had, only half of a pill. I dont know what is going on but I am cranky The crockpot is my friend today.

To top it off ds2 broke a bone in his foot and is now on crutches. Ds3 took him to the er on sunday. He didnt want us going. He is trying to get an appt with the ortho. No luck so far. Also its his driving foot so this is bad. I hope he can get a boot or aircast.

In the next 2 weeks I am going to have the blood tests and sono. Its on my to do list.

GAGWTA. Thinking of you all.

 

[CherylDan]

Just a quick update......this week has been one step forward, two steps back. We saw the oncology surgeon on Monday, he explained everything in detail - basically it is very risky and very complicated. But, it seems to be the best option at this time. However, after looking more at my last CT scan, he is seeing what might be bone mets, which would make me ineligible for the procedure. So, we are now waing for a PET scan, but my insurance seems to be holding it up.

So, currently in limbo, may or may not be eligible for this HIPEC procedure, may or may not have bone mets, may or may not still even be interested in the surgery. Blah. I'm very cranky. And just really mad at the world right now.

 

[snappy]

Cheryl, I am keeping my fingers crossed that you can schedule the petscan soon. I am sorry you are in limbo and I too am angry at the insurance company for stalling. That is maddening when you need answers.

I am glad the new doctor was able to explain the procedure so you understand the risks.

Please keep us posted. I am rooting for you.

 

[luvmarypoppins]

Cheryl - I am glad the onc. explained things to you but how totally maddening and frustrating that you have to deal with the ins. co. It is totally aggravating when you are trying to focus on you and what needs to be done.

Sending you lots of thoughts and prayers. Thinking of you. I can hear you roaring from here!

Hang in there!

 

[Feralpeg]

Cheryl, Waiting is so hard. Thinking of you and praying that you get good news soon!

 

[CherylDan]

thanks ladies.

Still no word on the PET scan. .

I go tomorrow to have more fluid drained. That should help with some of the discomfort.

With all this time to think about things, I'm really starting to doubt having the surgery. I'm just not sure all the rlsk is something I'm willing to take on. I have another appt with my regular oncologist next week, I think I want to talk to him some more about just having regular chemo.

Laurie, how is Snappy doing? And Linda, how about your girl?

LMP, hope your legs are feeling better.

Peg, hope your cold is better......sometimes they just seem to drag on forever.

Smiley, hope you and your DH are enjoying Hawaii!

GAGWTA

 

[snappy]

Cheryl, these sure are hard decisions. Can you make another appointment with the surgeon to further explore?

Snappy is hanging in there. Having trouble getting her take meds. At first the canned version of the kidney diet food was working, now she turns up her nose. I resorted to mixing it with a a few spoonfuls of my New Orleans version of red beans which is chock full of fresh seasonings (onions, green onions, bell peppers, parsley, garlic, celery).

She will eat enough to get the pill down, but I am not sure how much longer this trick will work.

Weather has been better so I am taking her on short slow walks, which seems to stimulate her appetite.

May take her in soon to get hydration again. Her nose is very dry and crusty, even with drinking a lot of water.

Thanks for asking.

Forget Smilie is in Hawaii! Now those will be some good pictures!

 

[robinb]

Hi everyone! Sorry that I have been away from the thread for a while. Things are going OK with me. I gained 15 pounds in the last 6 months since I was diagnosed and I was already overweight. I'm bummed but I am back on Weight Watchers and tracking my food and exercise. Otherwise, I am doing great. My radiation is over and I'm taking Arimidex instead of Tamoxifen. The oncologist did some tests and I am firmly in menopause. I'm still getting hot flashes though . I'm keeping an eye out for side effects of the Arimidex (MORE hot flashes and joint pain). If it gets to be too much, I'll stop taking it.

Cheryl: I hope that your insurance comes through for you. I have a love/hate relationship with my own insurance.

 

[GaSleepingBeautyFan]

My drains are finally out after 18 days. I'm so glad. I was totally sick of those things.

I received a phone call from the lab who was doing the genetics test to see if I was Brcca postive. Of course I had to leave a message when I called them back so now I'm playing phone tag. The message said they had a question about my insurance so I've no idea what's going on.
Probably is an issue now because our insurance changed on January 1st which is why I told the doctors office in November when they did the blood draw for it that the testing and results needed to be done before Dec. 31st, 2013.

My insurance has already denied one claim that I'm appealing. I have a bad feeling that it's going to be a pain dealing with 2 different insurance companies - one that we had when I had the surgery and the other is the new one that I'll be dealing with for the aftercare and reconstruction.

Never a dull moment that's for sure.

 

[luvmarypoppins]

robinb - glad thing are going well for you. Sounds like you have a good plan for the weight. Hot lashes are a pain for sure. The joke everyone always says to me is they are like going on your own tropical vacation.

Gasleepingbeauty - glad the drains are out. Yes ins. never makes it easy on the patient for sure. I have had to fight mine too for some biopsies and even the surgeon had to fight for one of my surgeries when they wanted me out in a day and i stayed in for 3 days. There is enough on your plate and then you have to throw in being your own advocate to the mix. So frustrating. Hang in there!

Well I am about to throw up but I prayed instead, Dh took ds to the ortho. He said they misread the x ray. So now he has a cast on and is suppose to be non weight bearing. They will recheck in 2 weeks. I dont know how he will get around the college campus. He will also need to get some rides. Ds2 can take him 2 days but I dont know his schedule.

The throw up part is that the dr. asked him to see his arm span. He said he had the classic signs of the syndrome my sister died from and now wants him to have a echo. I had him have one once and it was fine and we even went to one of the best geniticists in NYC and she said they dont have it and I dont either etc. Worse is there is no cure for this and if its bad the average age is 40 etc. I know they say you can have symptoms like it and not have a full blown case etc, so i am hoping this will be the case. My heart is breaking and I hope things will turn out ok.

 

[snappy]

Praying for your son, MaryAnn.

 

[Dancind]

MaryAnn, adding my prayers.

 

[Pea-n-Me]

Cheryl, I sent you a PM about the IP chemo. Thanks for asking about my girl, she is hanging in. She saw the vet this week and he thought she looked good and is holding out hope that we can still help her. He gave her more antibiotics for an ongoing UTI (fun collecting urine samples ) and tried a new medication to see if it will help her walking. Right now her rear legs are very weak and barely functional as a result of spinal arthritis: her brain and legs aren't communicating. We have to help her walk with a brace we hold. But she's still running after her ball outside which is amazing (sometimes even without our help when the ball is involved), she doesn't realize she's not fully functional and still wants to play. We got her some wheels recently. (Ironically we had a nice set for our last Shepherd but they burned in a fire we had last spring.) Yesterday I tried to get her in the wheeled cart by myself and it was a complete fail, this is what she looked like, lol. https://www.google.com/search?q=don...hl=en&client=safari#biv=i|6;d|Wf-rIEdDsZ8FAM: So we're taking it day by day. I hope Snappy is hanging in, too.

lmp, I hope your son is ok. That is nerve-wracking. I'd hold onto the thought that they've already ruled it out earlier. Hopefully they were right then. I see your son's in ortho hell too. How is your leg?

Robin, congratulations on finishing. Looking back at my experience, I really loved the period you are in right now. I was sort of beaten down, but I also felt refreshed and renewed somehow. Like it was a good time to stat over. And take stock of my life. I made a lot of changes in the way I lived and thought. I developed a new appreciation for things, people and time. Good luck on your journey.

GSBF, I remember my onc saying that with the gene testing, if you have to pay for it yourself they give you a couple of years to do it. Just so people will still do it. Some of the gene sequences that are newly identified require additional testing after you have initial testing. This comes up every now and then. I've been lucky my insurance has covered it. (Although my MRI was denied.) I hate dealing with all that.