April 2015 Chemo Crew... Starting in April? Please join us!
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Let us know, Fran!
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Fran, I'm so excited you are having a good response to H/P!!!!!! Your birthday sounds amazing. How fun. Cool that you were able to finish out your teaching year. Are you going back next year? It's so good to hear positive news from you on your medical response. Thinking of you!
justnwent in for my second round of fat grafting and a biopsy on a lump. The grafting was no big deal. I'll hear biopsy results at my followup. Hoping and praying for b9 results and for my PS to say I don't need any more grafting, my skin is healed enough for expanders! It does look more obvious this time on the radiated side, the skin is plumper. I expected to have new cannula scars both at the donor site and the treated site, but it looks like he went back in through the same scars, I didn't know they could do that! My donor site (stomache) is swollen a bit, but not painful yet. I'm still a little woozy, which I expect to last a few days, but not too bad!
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Hi All, I'm going to post this on FB too, so sorry for the duplicate, but just to reach the full audience. I'm wondering how, for those who have neuropathy, it is feeling these days.
I am about a month away from my year anniversary of last chemo. I have heard "it can take up to a year" to resolve so many times that I've put the neuropathy to the back of my mind until the year is up. However, I do not think my neuropathy is miraculously going away in 30 days, I'm resigned to that. But, the last few weeks, I actually feel like my toes are even more numb - tingly - than before. I want to think that this change may be a sign of something happening. OTOH, it could be that due to sleeping in splints every night, the circulation is compromised. Probably 50/50 on that one :-) So, I'm interested in hearing from the rest of you about your current state of neuropathy. (BTW, while the feet - toes and ball - are the worst, I still have finger tip numbness too, oh joy :-)
The rest of this I won't repeat on FB - too long and boring.
I've been pretty busy over the last 3-4 weeks - it's amazing what takes me full days when I'm not working! Part of it is taking advantage and doing things that I couldn't before - like volunteering for field days and year-end BBQ at my daughter's schools. My brother's wedding was 6/4, and we were busy up to and after that. The following week was my birthday - kinda uneventful, but I definitely reflected on what a difference a year makes. I've been doing some job-hunt-related tasks daily, I've applied to a few jobs, but no interviews yet. We leave for our annual vacation to Maine on Saturday, so I figure I am going to hit it hard when we return - there shouldn't be anymore distractions.
Speaking of distractions, I got a ceiling fan for my birthday (thank you hot flashes :-), and in order to install it, DH had to climb into the attic through our closet. The closet that you couldn't even see the floor of. The closet that hasn't had a decent cleaning in, oh, probably 9 years? So, piles of stuff were moved out and into our office - which was ok with me because it definitely was on my to do list. Then the Epilepsy Foundation called and said they were doing a pick up in my town on the 17th, did I want to donate. Hell yeah. So, I have been on a major purge - in addition to the closet, we have a huge 5 drawer dresser in the family room where DH and I had overflow clothes - I went through that, and all my dressers in the bedroom, and I moved on to my linens. I counted everything/itemized and logged it in "it's deductible", and I'm up to $1500 of donations. I have 7 green garbage bags full, a couple of bikes, and a fish tank! The reason I say I have it because the EF didn't pick up my stuff (I guess they couldn't see if from the road), but I had also gotten a call from Big Brother Big Sister, and I signed up for their pick up for tomorrow.
It feels very good to be getting rid of all the stuff. Unfortunately, I did donate a bunch of smaller clothes that I know I won't be able to fit into anytime soon. That sucks, but I told myself that I will lose weight, and then I'll be able to buy new clothes to wear - it just doesn't make sense to hold on to all these items that, by the time I would fit into them again, would be totally out of style.
In between all the purging, job search, and volunteering, I have been trying to keep our pool clean, which is an endless task with all the stuff that has been falling the whole month of June. I've been able to do a little reading for my book club, but I'm looking for suggestions for vacation - anyone read any good books?
Lynne
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I mentioned on Facebook that my neuropathy is just in the heel of my right foot ...odd. I always wonder if I somehow missed that when icing! Thankfully my fingers all seem okay. I do get hand pain from time to time, but that could be neuropathy or Letrozole. I did forget to mention on Facebook that after chemo last time, I developed carpal tunnel and cubital tunnel. I had severe pain and numbness. I had surgery and it's 100% better now.
So glad you've been doign some cleaning Lynne. It sure does feel good to purge stuff and clean stuff out. I did some of that, but I definitely need to do some more. I am trying to get control back of my house this year! I am making slow progress.
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Lynne, The ceiling fan is MUST for me. That is a great gift!
I have also been purging and trying to take my house back. It is a very slow process but feels so good when done. I start one cabinet, drawer or closet and realize the place I want to move something to also needs to be reorganized. Never ending process.
I'm baking 100 cupcakes right now for our local Relay for Life event tomorrow. A fun Hawaiian theme, Re Lei. We are all wearing Hawaiian shirts and flower leis to go with the theme. Looking forward to being there. And I will be thinking of our group as I do my survivor lap.
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I still have the narrowest band of neuropathy across the palm side at the base of my fingers. It doesn't really have any affect on how I function, so I don't think about it often. The joint pain, however, is still an every minute of every day issue. I've been in physical therapy about 8 weeks now to rebuild lost muscle tone and address some internal rotation on my left side. I started plaquinil (an RA) drug on May 9th despite a non-RA diagnosis because of the synovial fluid in my fingers. M.O. ordered a food antibody bloodtest to see if I may have developed food intolerances. It may be that my gut was just as 'burned' up as my mouth was during chemo. A leaky gut is frequently associated with multiple food intolerances and also with many auto-immune diseases.
Long story short...I am on an elimination diet from all the foods my blood showed an antibody response to....wheat, corn, rice, oat, tomato, cow's milk, egg, peanut, walnut, almond, cane sugar, canola oil, black/white/green/cayenne pepper...plus 15 other things. And, everything else has to be eaten on a 4 day rotating schedule....eat an apple today, no more apples until Tuesday. Yes, food sucks again this summer. It sucked last summer. It all sucks. Sucks, sucks, sucks, sucks, sucks. I may supposedly be able to return some of the list to my diet eventually as it is most likely only 1 or 2 foods responsible for the joint pain. In the meantime, my gut gets a break and I am nourishing it with L-Glutamine again to try to strengthen it.
Sometimes, I just daydream about eating a giant chocolate cake like a 1 year old and washing it down with a huge, cold glass of milk. And then I go back to eating my dry coconut flax-bread with black eyed peas and cauliflower rice.
So if anybody has any grain free, dairy free, egg free, sugar free, pepper free.....recipes, send them my way.
Fran, it sound like an awesome birthday party with some amazing friends. So glad you were able to finish out the school year as you wished. Even though it's hard being in limbo about treatment, you have the right idea about taking things day by day. The future may be stressful enough, no need to ruin today fretting about it.
Lynne, good luck with the job hunt after vacation. So excited to read about your annual family trip to Maine. I remember reading about your trip last year and how you had to take a break during it for a chemo treatment. I was amazed how enthusiastic and energetic you were still able to be. I hope you have an amazing time this year!!! And let me know if any of those side effects magically disappear at the 1 year mark. 😉 I guess we can all hope. Right?
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Renee! Have an awesome day tomorrow and eat a cupcake for me!
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Dizz, that sucks, though I know the elimination diets are a good way to narrow down the problem. Can you eat actual rice? Lentils? I do indeed have some recipes.
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I totally agree with Susan, Heather, that sucks! Anything to do with food issues seems like a major quality of life issue to me. But, of course, if food is making you feel shitty . . . no pun intended.
Renee - YES, that's exactly it - there are so many areas that need to be cleaned and sorted out. I am grateful that I have the time to devote to it right now. I have a bunch of projects that I'd like to do, but I realized that the decluttering has to take priority - when I get a job (notice I didn't say 'if'), I will be happy that I my house is better order (I'm realistic enough to say "better" not "perfect" - it will never be perfect.)
Heather - yes, last year was a different in so many ways. What I remember is when our cottage lost power, and then I had to leave the kids to come home for my treatment. I was in a panic and almost turned around 3x on the way home - just thinking of all the possible tragedies that could occur. So glad that is all over. This year will suck because of my feet. I'm still going to attempt to go on my daily walks with my sisters, but I will have to cut them short/go slow.
Ok, back to packing - my girls just woke up, lazy day - I would have liked to be on the road by now, but another year where that's not happening.
Lynne
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Hey Susan! No rice, yes on Lentils...every four days. I love lentil days. Plain lentils, lentil pasta, mashed lentils...I've tried it all. I'm also supposed to rotate all my seasonings like garlic, cinnamon, thyme, rosemary, sage, onion, shallot, mustard...etc., but that's really not going to happen. I'm using liquid aminos in place of soy sauce (contains wheat) probably every other day and garlic, cinnamon, and mustard are the only tools in my arsenal to obtain any spice to anything at all. I'm thinking of experimenting with wasabi or horseradish. I made a great homemade cereal today out of puffed millet, cinnamon, maple syrup, and a sprinkle of coconut sugar....even though my coconut day isn't until Monday. Almond milk is out unfortunately, but coconut milk isn't too bad. I also can't have cashew milk, because every brand I have found contains almonds in addition to the cashews. I am allowed a certain amount of soy, so I use a little soy milk and soy yogurt...which causes me to cheat on cane sugar. Cane sugar has been the hardest thing to eliminate, not because I'm dead set on eating sweets, but because it's freaking everywhere and in everything.
I'd love any and all recipes you've got that might fit the diet and be new and different from what I'm doing.
Today's lunch: kale and quinoa tots held together with chia/flax egg. Not too bad when I dip them in my hearts of palm/garlic dip. I'd rather be eating a turkey sandwich on whole grain wheat bread with a slice of provalone!!!
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Tamari doesn't have wheat. Have you looked at it to see if the ingredients are acceptable?
Cook up some lentils. Set them aside. In a saucepan, saute onion, shallot, scallion, or garlic (or several) in olive oil (or ghee or whatever oil you're permitted). Add the spices you're allowed to add--either go Indian with mustard seed, turmeric, cumin, and similar, or go Euro with oregano, rosemary, and similar. Add a little salt or tamari. Add chunks of whatever protein you're allowed--lean chicken or tofu, for example. Saute until cooked/armed through. Add the lentils and some liquid if needed to get a stew-y consistency. If you're allowed alcohol, add a little dry sherry or red wine. Simmer until you like the consistency. Correct seasonings. Best if you cool it, refrigerate overnight, and re-heat.
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I like to cook up a big batch of quinoi at the beginning of the week. I then mix it with some various vegetables, some olive oil and a vinegar and some hers. I have that for lunch a lot. I also will heat it with things like squash and other veggies...sauteed. I do know if you heat white beans and puree them and add a bunch of garlic, you can make a nice white sauce for veggies and such. I have a lot of food allergies and intolerances (and now more), so I do understand...though my list is not as exhaustive as yours. Sometimes when I get frustrated, we'll take out several ingredients I CAN eat, put them on the counter and play Iron Chef. We've created some of our best recipes that way!
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Oh, Dizz, so sorry about the food! Yep that really sucks! I can't even imagine trying to eliminate so many things and being so careful. I do think the chemo was harder on our GI systems than the docs realize. I have noticed more problems lately with fresh fruits and veggies when I eat too many uncooked too many days in a row. My stomach does not tolerate. Also large heavy meals give me irritable bowel. Can't eat like I used to and I LOVE food. I love my fruits and veggies. I don't eat meat, never cared for it even as a child, but I do eat fish and eggs. Still the challenge you are going thru what a pain. Hope it gets better and the joints improve. Errrggghhh
Susan, your lentils sound fantastic. Karen, I like the white sauce with beans suggestion too. I do chick peas make my own hummus and add different things to that all the time. It is a staple I eat for lunch frequently. Just had a great kale pesto sauce last week. Basically sub the kale for basil and everything else the same. It was delish! Avocado is also great to experiment with and versatile. I think more and more people are getting on the clean, less processed food. So we can hope options open.
Attended our local cancer society event Sat. Beautiful luminary closing ceremony and reading of names of those who have lost the battle. I truly believe every day must be lived by us fully and positively in their honor.
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Dizz so sorry about the restrictive diet-what a pain in the butt (or gut). It definitely sucks!!!!!!!! I would think going out to dinner is very challenging to say the least. Hang in there and hopefully over time the situation will resolve and you can resume some sort of a more typical diet.
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Dizz, can you eat artichokes? I find them very satisfying (full of fiber and tasty). Wash as many artichokes as will float in a large saucepan of water (they shouldn't touch the bottom when cooking). Trim the points of the big leaves off with kitchen shears, or chop off about 1/5 of the crown, or don't worry about it, as you choose. Fill your saucepan. Add artichokes. Add a little salt and lemon juice. Bring to a low boil and maintain at that level, turning the artichokes a few times so all sides are immersed. Melt some butter or ghee, or heat some good olive oil. This is your dipping sauce. I usually add a little seasoning to it--whatever you're allowed to use (I use salt, black pepper, oregano or dill). Cook artichokes at a low boil until you can pull out a leaf from the 2nd row in easily (LE note: Use gloves and tongs if you need to). Serve with the dip. Don't forget that when you've eaten the edible part of the leaves, you can scrape out the inner, thin leaves and the choke (the fluffy stuff) and eat the heart down to the stem. Boiled artichokes are also good cold with a mayo if you can eat it, or vinegar & oil-based dressing. Artichokes go well with sausage--when my wife was highly restricted, we were able to buy ground sausage meat with no bread. You might be able to find or grind your own and season it with your current spice options.
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A lovely trip to Glacier with some lovely ladies from April and March!
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hi:) haven't been around here in awhile. But I'm freaking out. I've been having armpit and groin area pain. I just had a liver mri yesterday because they saw an 8 mm lesson on my liver in a breast Mri I had done last year. And due to freaking out about chemo n rads last year I'm just now following up on the liver . I'm constantly freaking out about lymph node lumps... I feel like I found one in my groin not sure if I'm just being a nervous nelly or not but the area is sore(slightly painful and achy) and so is my armpit area. I'm getting a second mammo on Tuesday because I'm freaking about that too. Holy cow I'm constantly anxious about it coming back
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Hi Stacy! Hang in there. I know it's tough not to "Go there"....Remember to take things one at a time. When do you find out about your mri? When is your next oncology/surgical/rads follow-up? Any recent bloodwork? Try to tell yourself that 'until proven otherwise' you are okay and you are going to be okay. Speak up about your aches and pains...don't explain them away - let your team investigate them. If they don't want to investigate something, find someone who will. Good job following up with the liver mri and mammogram. Remind yourself you are doing what you need to do to stay on top of things. Anxiety is normal, but don't let it control you. Remember what we fought through last year. You are strong and brave and can get through all these tests and waiting too.
P.S. I'm saying all this as much to myself as I am to you. My MRI follow up is tomorrow morning and I am nervous too. I keep trying to remember that if something is found, there will be plenty of worry to be done at that time...no need to borrow any today.
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phew feels good coming from someone else tho... fer sure. I try and calm myself down but it really doesn't work well. The nurse said I could possibly get a call tomorrow about the mri... Which I'm keeping my fingers crossed for.!. I hope your mri is quick and painless:) I'll keep ya posted:) thx:
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We will all be right there with you 'in your pocket' as they say. Let us know what you hear. Heather
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Stacy so sorry for the worry and stress. Keep us posted. Will be in your pocket and saying a prayer.
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Keep us posted. Hoping all comes back normal
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Well, my MRI is completed and the report is all good. M/O follow-up...check. P.S....check. Psychologist....check. Tomorrow I'll follow-up with surgeon and then I officially don't have to fly back to Illinois for a whole 6 months!!! Reconstruction is officially as done as it's going you get. I'm still seeing the rheumatologist at home every 2 months...Is everybody else as sick of doctors as I am?
Hanging in there Stacy?
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Dizz, Glad all looks good! And happy you do not have to return for a while
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Great news, Dizz!😀
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Hi Stacy-hang in there girl-remember to take it one day at a time-those "what if's...." will drive you nuts if you let them. Lots of positive prayers being sent your way!!! Please let us know how it all goes.
Wahoo Dizz!!!! So happy for you.
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How is everyone doing here? Its pretty quiet! Well, im scheduled for TE installation on Oct. 27. Does anyone have any advice for me? Hope everyone is well!
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Hi Jen. Sorry I can't help with the TE, but wanted to pass along good wishes for an easy recovery. Hopefully someone else will be able to give you the low down. What I remember other people saying, was that it was the 'fills' that were the most uncomfortable part of the TE. The women I met with TE also complained about how hard and rigid they felt. I guess it's only temporary...it too shall pass.
My surgeries are all done. I've still got a few 'divots', but only I'll ever notice them. I'm so sick of recovering from surgery - I'm done worrying about it. I'm on an every 6 month schedule with MO, SO, PS and Psych. Still on meds for insomnia, joint pain, fatigue, etc. and in PT and OT. Elimination diet still sucks! It feels like yesterday we were all still in treatment...so hard to believe it's been over a year since we finished. I hope everyone else is having more success with their hair then I am. The sides and the back grow....the top, not so much. Anybody else get irritated when doctors suggest that "time" will cure all?
Heather
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Heather, Glad you're on a 6 month schedule now. My hair is growing, but I can't manage to style it, so I put it back or put on a hat. I keep waiting for time to ease things........ Hasn't happened yet
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Heather I have the same hair issue. The back and sides are growing well, but the top/bangs are thinner and slow. I'm on Arimidex, so that could be a factor. I had a 3 month pause from Herceptin....just completed it in September....body hair grew slower on Herceptin, so maybe I'll see more progress now.
Glad your surgeries are all done! Yes, I agree, hard to believe its been a year since chemo...coming up on 2 yrs DX and that doesnt seem real!
I'm on 3 month schedule of seeing MO, longest I've gone in so long, it felt really strange not seeing her and the chemo nurses often.
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