2013 Survivors!!!
Comments
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Hi everyone, I am asking for a mid May date for the ooph..... I have a wine fest weekend with my Vancouver girlfriends beginning of May and on the 15th have all my lab work/clinical trial drug on the 15th. So.......... back at the docs this Thursday morning - very pissed off - think I am developing lymphedema - fuck, fuck, fuck. Its very slight and I have been doing the exercises so just started wearing the sleeve - seems to have helped a bit. BC eh? the gift that really does keep on giving.
Anyway good to see everyone and Marian what a wonderful picture you posted and sounds like a wonderful vacation.
Lostinmo - hugs xxxxxxx
Websister - hiugs xxxxxxxxxxxx
Everyone big huge hugs xxxxxxxxxxxxxxxxxx
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Hi to everyone. Good to see all your names on the posts... reminds me of the good part of that year. All going pretty well, had a bone scan which was clear. Trying to ignore the aches, pains, and stiffness. Overall, I am starting to feel like maybe it is behind me, for now.
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Hi Ladies! I've been MIA but think of you all often and I read all your posts. I'm without a computer but do pretty good on my phone. We are still in Laughlin. Going bead shopping in Quartzsite again tomorrow, in case you will be around, Lostinmo. Having a wonderful time and won't be leaving until the end of the month. I guess this place can be described as my paradise. The weather is warm & wonderful. I've made so many good friends and reconnected with a local church. Life is good. I have the same aches and pains we all describe but they aren't bad enough to slow me down.
Hugs, positive thoughts and best wishes to everyone!
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Morning! Well hubby made it back from Vegas. He had a great time. Said his favorite thing to do was the ATV's in the desert and the gun range. Go figure. It's been quiet around here which is a good thing. Looks like it's going to be a gorgeous week. That's about it. Sad day when I can say boring is a good thing. Not that I'm not keeping busy. Had a great dinner with BFF last night and this Saturday going out for monthly dinner with friends from HS. Then getting ready for Easter! Can't wait - house full of family. Think I'm going to take a ride to Lancaster next week and do some shopping. Want to get new dishes. Mine are old. And besides I love going to Lancaster!
Hugs to everyone, be well and in pockets where needed!
Karen
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HI Lisa, good to hear you are doing well.......except for the aches and pains - which I think most of us appear to have
Karen: glad DH made it back safe and sound. They generally do
We are having some amazing weather at the moment - so enjoying the sunshine and the fact that plants are sprouting in the greenhouse. Will soon be ready to plant.
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Tazzy hope its not lymphadema and if it is, very very mild!
Lisa, good to hear that scan was clear!
Believe, glad you loving paradise and with good friends to boot!!
Karen, enjoy your outings and shopping spree.
Websister..hope your cardio appt went ok today!
Off to Fla once again tomorrow to visit Dad..this time for 2 weeks. Have been keeping busy here with son's wedding planning. Picked up my dress today. Better make use of that Fla weather and do lots of walking and swim time so that it still fits end of May!
Was back at the BS office today seeing nurse with another strange happening on lefty...itching like crazy!! This started 5 days ago and even with cortizone cream, benedryl lotion and pills etc nothing helped. I have been sleeping quite cozily...with a frozen bag of veggies! They work great stuffed in a pillowcase so they don't touch directly. So with going away for 2 weeks looming, called and got in today with nurse as Dr. in surgery. She also saw and felt nothing out of the ordinary. Told me to try Sarna cream as it has a menthol like feel that eases itching. So bought that and will buy again in FL since I can't take on plane. So tired of lefty getting red spot, itching etc. Sending my BP higher than it has ever been. Ready, like many of you, to have a rest from all these extra curriculars of the body that then go to the mind!!
In your pockets as needed and will be checking in from down south!
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MarianElizabeth - so good to hear from you and see your picture, sounds like such a wonderful trip and you did so well!
Believe - hope you and LostinMo were able to get in a visit
Karen - good to hear that DH is safely home now. It certainly does sound like you are keeping busy, enjoy your Lancaster shopping trip
Tazzy - isn't it exciting to be growing plants and planning to plant again?
hope that lymphedema settles right down and causes no further trouble for youAruba - sorry to read re: lefty, it would be a concern, hope the cream works it's magic for you. Enjoy your time in Florida - take good care of you and your DF.
Re: cardiologist visit - they don't have too many answers - two heart valves slightly leaky, my left ventricular ejection fraction is down from last testing to 51% but still low normal and he didn't really want to put me on a betablocker. Oxygen saturation is 94%, used to be 99% but still lower side of normal. Other tests were good, hemoglobin has never been better. They are suggesting that I could just be one of the people that has developed cancer related fatigue, like chronic fatigue syndrome.
Meanwhile, sun has been shining here and it truly seems like spring is going to happen. Easter will be here with an Easter egg hunt in our backyard with the grandkids.
Take care everyone
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Aruba: have a great trip and good luck with the itchiness!
websister: yes it is so great to be planting again - the best therapy ever and way cheaper than a psychiatrist
Well its official, I do have LE - but caught very early and I have been doing all the right things so far. See the LE specialist next Wednesday - reinforcement of what I am doing and anything else I can do. Oh! and I have my date for my sal-ooph! 20th May - so keep the date for a pocket party in the Okanagan.
Hugs all - best get back to work now
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Hi all and welcome to our new gals. Sorry you have to join us but these women are amazing if yiu need any advise or just an ear to listen.
I also have been MIA......just a long brutal winter that has kept me from being my OLD self....lol
I'm off work at the moment as it seems I have a tear in the miniscus of my knee. I will have a bone scan
next Friday to verify this. Had that awful upper respiratory virus that is going around, and finally after
three weeks, I think I'm on the mend there.
Tazzy......hugs and good wishes for the upcoming surgery.
Aruba.....enjoy that holiday.....💃
Lisa.....glad you are starting to feel better.
Believe.....missed you.
Lostinmo........great bigs hugs to you girl....((((()))))
Marian......I'm following you on FB.....you sure are amazing. At least I have my knee issue right now as my excuse for doing absolutely NOTHING......lol
I know I have missed many.....thinking of you always, that goes without saying......❤️
I'm in all pockets when needed......love you all......❤️
Jo.....can't wait for you to get back so I can continue bugging you..hahaha
Have a great weekend everyone.
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scottiee1- trying to hobble my way back to Michigan from Arizona. Doc in AZ thinks a torn miniscus and plan to see an orthopedic doc when I get home. I had worked my way up to three miles of walking every day and now nothing. I'm trying to get healthy but something sure is working against me. Let us know how the bone scan comes out.
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I have been in Port Charlotte, Florida for 2 weeks and heading home tomorrow ... Each year I take a foot picture ...my yes weird maybe but .. This was taken in Boca Grande Beach.
I have been reading a bit but will catch up when I get home.
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Tazzy - sorry about the LE, but as you said it was caught early. Good luck with the ooph and I will definitely be there with you. PM me if you have any questions.
Scottie and Jo - I tore my meniscus last September and ended up having surgery in November. The surgery was minor and I was walking on it the next day although very slowly. It took PT and a few months to be completely better, but I am back to normal now and walking again now that the weather is finally getting warmer!!!!! PM me if you have any questions!
I have been extremely busy and not posting, but reading everyday still. We are getting ready to go to NC for the week and I can't wait to get there!
My youngest DD had her EEG and it came back normal (thank you all for being with me in my pockets!), but I gat a call earlier today to pick up my other DD that has Epilepsy from school since they think she may if had a seizure or was getting sick. She slept for 1 hour when she got home and was completely fine after so I am thinking it was a small seizure. At least we are going to rest next week at the beach and I can watch her for anything else. It is never dull in our house!!!!!!
Hugs to everyone else!!!!! In pockets as needed!
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momof3great......your post has given me hope...thank you....I'm just so frustrated. Now that the better weather is here (finally) I'm at home resting this stupid knee.....lol
Will keep you posted as to the results of the bone scan.
Joe6202......I sooooo feel your pain.....hopefully we will both heal quickly and be able to do more than crawl around.....lol
Jo.....glad you had a great holiday...you sure deserved it.....sorry it has come to an end.
Tazzy....forgive me.....I meant to comment on your LE.....I hope you are getting it under control......
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Hello ladies! I haven't been on in a long time. There is no way I'll catch up with all of you - so sending hugs and jumping in pocket parties where needed. Things here have been very busy - but good. Work is keeping me super busy - but I've been getting much better at drawing my boundaries and remembering my priorities. I managed to go away on a short business trip and this time not get any panic attacks - was very proud of myself. Seem to have gotten into a groove with managing my LE (Tazzy - sorry about yours - PM me if you want to chat at all; my therapist is great and armed me with a boatload of tools) so feeling good about that. And my hubby and I just started juicing today! He is going all out - doing the 15 day reboot if he can pull it off. He seems determined to lose a lot of the weight he has gained. I intend to just insert a few juices into my daily diet in place of some of the other stuff I eat. I had about 3 glasses today and have to say - not sure if its mind over matter - but I feel charged up! Websister - I hope you're feeling better these days... Maybe some juicing with help with that fatigue a bit?
Anyway - just wanted to hop on and let you ladies know I'm always thinking about you. Things here are good. I'm busy living! Go get your happy!!!0 -
Here here to juicing! I have one 8 ounce glass in the morning and my energy level goes through the roof. Best thing I ever did.
Annie
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I love it! Even my kids like my concoctions. Best investment I ever made was purchasing a nutri bullet. I throw a little fruit, lots of greens some ice and coconut water and I'm good to go! My favorite is peaches, mint, spinach, kale,broccoli and cauliflower.
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Websister can you tell me more about the cancer related fatigue? Do they think it's CFS? The reason I ask is I'm so tired all the time it's all to do to get out of bed. If I didn't have to get the kids off to school I would spend the day in bed. As it is I'm lounging around more often than I should be and when I do get to the gym I can't do much. I know there is a correlation and honestly I'm worried. Just one more thing to talk to my MO about.
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Karen - my doctor gave me a handout about it today from a presentation she went to on it at a conference earlier this year. I will try to condense the information on it and post, won't be tonight though, out of energy.
Ramols - so good to hear the juicing has made you feel so good so quickly and that the lymphedema is under control. My happy for the day to read that
I have been making smoothies for myself almost everyday for a few years now with lots of good veggies and a bit of fruit; can't imagine how I would be if I hadn't been doing that all alongTazzy - sorry to read about the lymphedema for you, glad you caught it early. Yay re: surgery date
Good to hear from you Scottie - sorry to read about the knee problems you and Jo6202 are having
LostinMo - think of you often
Take care everyone I haven't mentioned
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Websister.....I would be very interested to hear about the conference also. I too am suffering from fatigue.....however, I am almost 67 and still teaching. I have lots of energy until I return from school and then all I want to do is relax, which I'm doing right anyway because of my knee. At least now I have an excuse.
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Scottie and Karen - Cancer Fatigue Syndrome - notes from the PowerPoint presentation - hope these help
What is Cancer Related Fatigue (CRF) - distressing and persistent fatigue; subjective feeling of tiredness or exhaustion; related to cancer or cancer treatment; interferes with normal life activities; disproportionate to level of recent physical/emotional/cognitive exertion and activity; not relieved by rest or sleep like normal fatigue
How is CRF different? - unexpected sudden onset; more rapid onset of symptoms ('hit the wall'); more intense; more energy draining; longer duration (2 weeks or more); symptoms include physical, emotional and cognitive components; not relieved by rest
What are the patterns of CRF? - decreased stamina/reduced energy reserve; symptoms triggered by over-exertion/overspending of energy; non-negotiable compromise of energy (can't push through it); things take longer to do; more effort is required; fewer tasks and activities possible in a day; takes longer to recover energy
What are the symptoms of CRF? -
Physical - dull headache; general muscle achiness, loss of appetite and mild nausea/emptiness in stomach; body feels heavy, especially legs, as if one is wearing a coat of armor; chills and difficulty keeping warm; difficulty standing for significant period of time (overwhelming need to sit or lie down)
Emotional - decreased ability to cope; more easily overwhelmed; increased impatience, irritability and outbursts of anger; decreased motivation to do things; more easily discouraged or depressed; melt down or shut down in exhausted state
Cognitive - (chemo brain, brain fog) decreased concentration; mental fogginess; poor short term memory; difficulty multi-tasking; challenges with word-finding; compromised executive (planning) function; tired eyes with difficulty focusing
What causes CRF? Complex Web - Components may include -
Disease - other co-existing medical conditions - thyroid dysfunction, diabetes, chronic respiratory conditions; cardiac conditions, electrolyte imbalances, infections, dehydration, malnourished state, pain, anemia
Treatment - surgery, chemotherapy, radiotherapy, bio therapy (eg Herceptin) - can produce profound fatigue, flu like symptoms; hormone therapy - hot flushes impact sleep; bone, muscle and joint pain
Psychological - sleep disorders, stress response - too much stress in life; poor coping style; fear and anxiety; depression
How can you manage CRF? -
Optimize sleep - go to bed and get up at same time (earlier and longer initially to rebuild reserve); limit naps to early afternoon and for maximum one hour; limit caffeine and alcohol and avoid late in day; avoid exercise, computer and TV one hour prior to bedtime (read, quiet music, warm bath and cool down, stretching); use bedroom for sleep and sex (no computer or TV); keep bedroom cool, quiet and dark; if you have not fallen asleep or if you wake up and can't get back to sleep within 15 minutes, get up and go to another room (decreased lighting, quiet boring activity); try again - repeat as needed; try breathing exercises, visualization and other relaxation techniques; discuss short term medications with your physician
Optimize nutrition and hydration - start the day with a healthy breakfast within 1 - 2 hours of waking; eat frequent smaller meals with mid-morning and mid-afternoon snack to provide steady fuel supply; stay well hydrated with 6 - 8 glasses of water a day; be cautious with caffeine, alcohol and energy drink
Optimize activity and exercise - choose activity you like and suits your age, health and fitness level; start slowly and at your own pace; gradually build up to 30 minutes of activity per day - with Cancer Related Fatigue slow and steady wins the race as opposed to 'no pain, no gain' philosophy
Optimize energy management - pacing; prioritizing; positioning; planning and organizing; identify energy drainers and energy builders; monitor energy levels
Monitoring - it is important that you track your CRF to schedule activities, monitor your energy and adjust your pacing and energy management
Use a fatigue journal - note when you have the most energy, when you have the most fatigue (symptoms); note patterns in your energy use to explain energy and fatigue levels; what made it worse and what worked to make it better
Optimize stress management - relax your body, mind and emotions - deep breathing; relaxation exercises, guided imagery; meditation/prayer; quiet inspirational reading; gentle massage; yoga or gentle stretching; spending time in nature
Optimize your support team - strengthen the circle of people who love and care for you; seek support groups, counselling and psychotherapy as needed; involve your physician and other members of your health care team; access rehabilitation specialists; work with health coach, personal trainer familiar with cancer related fatigue; obtain support from faith community/spiritual leaders as appropriate
Customized gradual return to work plans - I didn't go into detail with these but can provide info if people want
Summary
CRF now recognized as significant entity
Strategies continue to be identified to manage it
Multi-dimensional approach required
Time for recovery not yet established and may depend on specifics of person's treatment
Extent of recovery not yet established
Important area of current research
I was also told that a person from Calgary, Alberta named Alan Hobson wrote a book called Climb Back from Cancer and it relates his own issues with CRF and how he made it back to his passion of mountain climbing - I have ordered the book but have not read
Take care everyone
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Websister thank you for this info! I am going to read more about it
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Websister.....thank you for taking the time to post this....❤️.....boy, as I was reading the list of symptoms,
I was checking off everyone!!!!!!!....thank you again. I am going to order the book as well and do some
further research.
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Hi ladies - just caught up - going to try to get to it all, but I only have a few minutes here at work and I've been so busy after work I've had no time at all the past few weeks:
Websister; I got tired just reading that whole post -writing it must have exhausted you! Thank you!
Lostinmo: what's going on now - need an update? How are you doing on the new meds.
Tazzy; LE - that sucks!! I've been in MY GARDEN!!!! trying to get it cleaned up to try to plant some stuff to eat this year. LOL! I have NO IDEA what I'm doing!
Karen; glad hubby left and came back all in one piece.
Aruba; how is FL?
MarianeEliz: LOVE THE PHOTO... trip sounds amazing. I'm newly house poor so I'm going to have to live vicariously through you and...
Jo: FL looks like it was wonderful... LOVE the feet photo idea. I usually take one of my feet whilst reclining in a beach chair; with the ocean beyond them. :-)
Scottie; nice to see your hanging in there... we're all falling apart eh? I found out I have arthritis in my left thumb, not tendonitis as first guessed. It's hurting all the time. and the right one will catch up eventually.
Ramols; biz trip huh??/ We need to plan another NYC get together...SOON.
I KNOW I'm missing people - so sorry. So I'm still dieting and execising to no avail. They changed my meds to Metformin which actually helps the body process insulin in 2/3 of the people who take it. I'm not really seeing any results yet though. I'm thinking with my luck I'll be the 1/3 who it doesn't help.
My friend has talked me into running a 5. I'm nuts, but I am checking this off MY BUCKET
LIST!!!! It's for a great cause... THE ELEPHANTS! I've wanted to run a 5k for over a year now. I'm going to ask if any of you might help me and donate just $5 or $10 to the
elephants!!! Please!?!? The url to my website is below. Any small amount will help! :-)Work is going well and I'm just plugging along. Wishing most days I could stay home in my lovely house. I am so in love with it I never want to leave. We put out the new Weber grill and table, chairs and umbrella last Sunday when it was 75 out. Watched the sun set as we ate. I made burgers on the grill and I ate mine with a BUN! (screw my diet!) It was amazing. We still have a ton of work to do, but we are taking baby steps. I don't have all that "free time" I used to have. The house seems to absorb it along with my "spending money". Guess a house is a lot like having children. Only is doesn't cry, spit up, or force you to buy a minivan (although a truck is in out future!). LOL!
Miss you ladies... I will do a better job at getting on here more often.
xo
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Hello everyone! Have been MIA, but all is good. It looks like I have about a dozen pages to read to get caught up, so I might not! Hope everyone is doing well.
Managed to spend most of January in St. Martin and that was the best medicine. Would love to stay longer next year as like most of you probably found, this winter was just plain NASTY!!!!
Looking forward to checking in here more often so I can keep tabs on what's going on. Missed you all!
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Have not been on here for some time, but want to wish each and everyone a happy Easter. Enjoy the weekend with your loved ones, and celebrate life!
Marian, your trip sounds just amazing, and you are doing so well having come so far in more sense than one. Congratulations!
I'm doing well after the last recon surgery 2 weeks ago. It is such a good feeling to have a nipple again, and to have the girls symmetrical and the same size/height again. With all the scars I will never be waitressing topless ever again - HAHAHAHAAAAA - but in clothes or swimsuit nobody can tell the difference. Will be visiting my grandchild for Easter, she's 7 weeks old now, and I cannot wait to see her again.
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Liefie,
So glad you are happy with your surgery. I look forward to the day the girls match again. Next week is my first mammo since diagnosis last August. If all goes well then will start discussion on reconstruction.
Jo6202
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Mariannelizabeth just saw there was a terrible avalanche in Nepal. You ok?
Want to wish everyone a happy Easter/Passover. I have my entire family coming Sunday and cannot wait! I'll be exhausted Monday but it'll be worth it!
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Happy Raster and Passover everyone!!!!!
We have been in NC this week and it has been great. My DDs even went swimming in the ocean earlier this week! We also heard from home that we missed a snow storm that left 2 inches of snow on the ground in April! Is Spring ever going to come and stay? Sadly we leave to go home tomorrow night, but it has been great while we were here. The best part is we are all together as a family with no outside things pulling us in different directions!
Back to reality next week with three doctors appointments in a week and a half. I am surprisingly not worried about my MO appointment on the 29th.
Take care everyone ! HUGS to you all!
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Checking in quickly. I started the carboplatin on the 1st and by the end of that weekend could already feel that the spot on my back was smaller. I also can no longer feel the hard edge of my liver, so I assume it has shrunk down those tumors too! No more pain in my abdomen, Yay! Tues I go back for the round 2 and will see what the dr thinks about it all but feeling positive about it.
Thinking of you all!
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For those that celebrate...
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