October 2014 Surgery Sisters

I'd been taking 2000 units of Vit. D (along with the mag. & calcium to optimize) but it wasn't keeping my levels up. I'm taking 4K units daily and we'll see what that does. Vit. D is best utilized when consumed with some dietary fat, by the way.

Fourminor  I went through the same experience you are having the first time around 20 yrs ago. Went through all the stats, kept reviewing all of them. Finally I stopped, they are just numbers for the general population of BC women. There will always  be exceptions good or bad . I choose CMF, the same thing your MO is wanting you to do. My experience was not bad, did not get sick nor did my hair fall out. It was a difficult decision so I know how you are feeling. Once I made my decision I settled down and focused on my plan to get through it. I don't regret my decision. You will get there too no matter what you deciede. Set backs and unknowns are stressful I hated those, so I am sorry you are going through what you are, I would give you a hug if I could. I felt like a leaf on a stream moving every day to unknown territory but I thought at least there was the chance I would float into some sunshine.

 I wanted to share with you what I did before rads. I put 35000 units vitiman e on my skin, didn't rub it in, at night before bed, put a t-shirt on, in the morning it was absorbed. I did not burn or even turn pink so it worked well for me.

I am seeing my surgeon tomorrow to go over pathology, see what I am up against and hopefuly set date for surgery.

TJG2 here is a yoga site that I found that I like http://www.msn.com/en-us/health/fitness/workout/details/yoga-breathing-for-congestion/yg-wo-0008?ocid=HPCDHP it says congestion but it has other breathing exercises.

Sandra thanks for input. I have been doing a lot of reading and what you say makes sense. Thanks

Rev,

Your words are lovely. "I felt like a leaf on a stream moving every day to unknown territory but I thought at least there was the chance I would float into some sunshine". What a blessing you are to us.

Rev, you belong to us now.

Thanks Revup, I'm kind of getting there. My feeling is more dark--Cancer is just a series of crappy decisions where you get to pick which is the least horrible and the house controls your wager.

I got my hair cut this weekend. I had her take it so its now just hitting my shoulders. I have pretty thick hair but if its going to thin out, i might as well make a plan.

I was told to take vitamin D last year by my primary care phys, but I am so anti medicine that I just stopped wearing sunscreen on my legs when i wasn't out in strong sun and on my face in the late fall and winter. I always try to use lifestyle and diet first for everything. I caved and started taking supplements while I was waiting for my mastectomy.

The new WHO recommendations are for no more than 25 mg of added sugar per day. This is really tough--probably won't get you through one meal of Western diet. The problem is that its added to so much of our food. Avoiding processed foods helps. Its pretty hard now that the holidays are here. When I try to turn down a piece of cake everyone looks at me like, "You alrealdy eat healthy what are you worried about?" And I don't feel like being the downer who says, "Cancer," but its always in my mind.

The dearth of nutritional attention and knowledge in medicine confounds me.

LauraW68 - I took Tylenol and it helped but at some point it wasn't doing the job after a fill, so I took Ibruprofen and that helped a lot. I think because it can help a little more with the muscle pain. Ibruprofen shouldn't be taken every day though because it can cause stomach and kidney issues.

Hi Everyone,

Wow! I took a few days off from this wonderful group and missed out on some great conversation! :-)

Lilith - thank you for your encouragement regarding work. Today would have been my original day back, but since I moved it to the 9th...here I still am. You are correct, mentally I am not ready to return. Since I didn't get my PET scan approved, I have to make more appointments for chest/abdominal CT and bone scan. Also, I qualified for the research study looking at low HER2 scores - mine came back at 1+. So, I have a few more labs/scans for that before I start chemo a week from Thursday. Still, with all of this, I am still fighting anxiety about not being at work. When I wrote to my boss letting her know that "docs aren't releasing me until the 9th", she did not reply. That makes me anxious. Also, my husband is absolutely driving me crazy with all his spending thoughts/plans. Now that we have his car paid off, he wants to trade it in (after selling his motorcycle) and buy yet another car. ARRRGGGHH! I am going to put my foot down and say, "no more big spending"! We have plenty, we are very blessed, but he is stressing me out as I am now down 60% and do NOT want to be in any debt. I hope this doesn't sound petty - perhaps it is...but I grew up very poor and worked hard to achieve financial stability. I guess it is something I hold on to and need to let go. Bottom line - I have too many appointments, we are hosting Thanksgiving and I am just not ready, so I will have faith that all will be well when I return.

Rev, Hopeful, TJG2 and all: Great talk about Vit. D. You are all correct that most women are low. Interestingly enough, mine is too high. My Vitamin D hydroxy-25 came back at 88, which is extremely unusual. At any rate, as an ex-nurse practitioner, I highly recommend getting vitamin D as "natural" as possible, as it is very difficult to absorb and make it through the digestive pathway and be absorbed by just taking it in pill format. Remember that the sun is your friend - here in Colorado, we get plenty of that. Also, remember all the veggies that are high in Vit. D and of course, if you can take dairy products, they are also naturally good for this. Interesting thought...with all the recent dedication to protecting ourselves from UV rays, perhaps we have also protected ourselves from the Vitamin D that we need. That would be a very interesting study.

Revup: Beautiful words! Do you by any chance write poetry? I have written a song, played it for my band on Thursday and the leader made me feel awesome by stating it is the best one I have written (that he has heard). However, I am really struggling with the last chorus. I plan on doing a quick down and dirty recording and will post to YouTube. If you (or anyone else) have a few minutes to listen and read the words, perhaps you all could help me finish it. It is one that I would like to actually record and submit, as I actually feel that it might have a chance.

SCMom: You made me laugh! No, I didn't ask my doctor if I could use cream/lotion on my skin after surgery. However, I am probably the most frustrating patient (as most providers are), in that I pretty much do what I feel is okay and don't bother asking. :-) However, you will be proud of me that I actually asked my PS on Friday when I could actually start running again - he said 6 weeks post-op from original surgery. So, I will actually listen and do what he says (begrudgingly) and until then, keep on the treadmill and walking the dogs.

You all are spot on about yoga. My hubby does it every morning and keeps trying to convince me to join him. Ummmm.... no thank you. I will get back to doing some ballet (after he inserts my barre downstairs). I do not. like. yoga. Yes, I am stubborn. ;-)

Finally - just wanted to share. Yesterday was exhausting. I sang/played at all three services and lead one of my favorite songs "Your Great Name" by Natalie Grant. However, at the first service, the first two songs made me start crying - and I had forgotten to look in the mirror before second service. So - during second service I had HUGE smudges of mascara beneath my eyes. It looked like I was getting ready to play some football or something. I can't believe my team didn't tell me! Anyhow - funny, but very embarrassing. I came down to sit in the congregation and my husband just looked at me and whispered, "uh, you need to go to the the restroom and wash your face!". Oh, I love him!

Akitagirl

Dear Robyn - Oh the chagrin of not being told about the mascara!! Honestly, you would think someone would have said something!!!

I'd love to see your you tube, of course.

Re: Vitamin D - those of us living north of the 35th parallel (roughly a line from LA to Atlanta) will not get enough of the necessary rays to produce Vit. D during the winter months, no matter how clear and sunny it might be. Of course, living in W. Oregon, we don't produce Vitamin D, anyway - we rust. I have learned that mushrooms are a surprisingly good source of D as well as containing protein and fiber. Eaten raw, they actually make a great snack. O.K. . I admit to being weird.

I am off this afternoon for my repeat biopsies. The results will show how well I've responded to neoadjuvant Femara, which will pretty much dictate the next steps in my treatment plan. PLEASE hope with me that the Ki-67 has dropped below 10%; that would be a very, very good sign and would make the rest of this process easier in many aspects. Thanks to all of you for your affection, caring and creative solutions to so many off the wall challenges.

Thanks, Mefromcc! Much obliged.

A smile

Hopeful8201… I lived in Oregon for 9 years, vitamin D was so low I had to start taking 50000 a week. Interesting that I have read vitamin D lowers Ki-67 mine is very high also. Wonder if there is a correlation to this. Did you have oncotype done. Fingers crossed for you.

That's GREAT news Hopeful!! I'm so happy to hear the Femara is doing it's job!!

I am trying not to obsess about BC as much, is that even possible? I did a puzzle with my son today. I really need to try to move on settle into my new normal. This is my last week of official time off and I'm back to work next week.

I hope you all have a wonderful Thanksgiving with the ones you love and may God bless each and every one of you!

Hummingbird, it IS great, isn't it? I am so very impressed with what it's achieved.

I understand the feeling of needing to move on and think puzzles are a great start. I hope you'll have a very blessed and happy Thanksgiving, too. I will be thinking of you.

Revup, it's YOUR turn for some good news. I hope it comes sooner rather than later.

Sandra-LOVE IT! My husband is very intelligent...BUT....needed help on which buttons to push on the dishwasher and used the upholstry brush attachment to vacuum the floors! LOL!