March 2011 chemo-lounge
Comments
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I am so sorry to hear so many of you are in pain - I feel like a stiff old lady and the pain in my hips can keep me awake at night, but nothing bad enough to make me cry. Jules and ks your's sounds awful. I hope the Vit D/Calcium is the answer. I am sure we will collectively find the solution to all these follow on issues.
ks - terrible about your friend, its so sad for her family and for you, we are lucky we have caught this in time for treatment.
Silia - survived a year - Yeah!
So glad you are clear Maxine - its hopeful for all of us. My supplement style sounds much like yours - the odd vit d, fish oil and baby aspirin, and green tea when I remember.
Maria - I think you are spot on with the exercise and stretching, it makes a world of difference. I also have to wait a bit longer before I can get back to my trainer. I did try earlier after the left MX in November, but had a bleed in side the wound and it got infected so I had to stop. Getting really stir crazy at not being able to exercise.
Saw the surgeon earlier this week and he gave has given me a different antibiotic. Said that if it does not work he will have to take me in for more surgery to clean the wound out and put a drain back in.
I told him that he could do that but that on the 25th Feb I will be getting into our 4WD with a tent, driving 2,500 miles over 4 days, and then getting a ferry to Tasmania to drive the Tarkine Wilderness for 2 weeks. Told him if he had not taken the drain out by then I would take it out myself before getting in the car. I think I scare him. The antibiotics he has now given me seem to be working - he has not scheduled the surgery, and he is seeing me the day before I go to give me a script for antibiotics (just in case) and aspirate the fluid. This bloody disease messed up last year - it is not messing up this year.My birthday today - got the whole family coming down to the beach at 5pm to swim, play giant Genga, and eat fish and chips - perfect.
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Happy Birthday, Penny, and many more. Sure hope this new antibiotic does the trick for your infection. You deserve a holiday. What's giant Genga?
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Giant Genga is the game with blocks where you build a tower and have to remove bricks - we have one that stand about 4ft tall.
Finally got the pictures from Mt Augustus - Me my DH and my sister, god the ground looks a long way below
and the book at the top
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Penny - what a special trip and photo. The write ups in the book brought tears to my eyes. Thanks so much for thinking of all of us!
Ks - so sorry to hear about Janet. It is shocking how fragile and fleeting this life can be. I will continue to keep her in my prayers. Hang in there and don't hesitate if you need to talk more about this.
Sending hugs to all!0 -
thanks Ladies
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Happy birthday Penny. What an adventurer you are. I think it is a great that your doctor is a little bit scared of you...ha! Better than the other way around.
Today is my cancerversary...I was at school around 2pm when my husband called, asking if the doctor had called me yet. I knew immediately. What a difference a year makes, in spite of the lingering aches, pains, LE, and PT/OT! A friend and I are going to go to a Zumba class at our local fitness center-starts in 2 weeks. Anybody done Zumba? Can I keep up? Will I regret this? I am not very active, outside of trying to walk on a semi-regular basis!!
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Kristy - I figure just being alive 1 year down the track is something to celebrate. Enjoy the zumba - my mum who is 83 has just started going to zumba classes - she says she just sits down for a while if she can't keep up!
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Penny: Happy Birthday, my dear! I hope this one is eventful in VERY different ways from the past year. Your entry in the book is very sweet. You are one amazing lady.
Kristy: One year for you! Celebrate!!! Congratulations.
Maria: I'm working up to the exercise level you maintain...the new elliptical machine is being delivered tomorrow. I hope I can keep up a schedule with it (and I don't mean dusting it!). I think exercise is the answer to so many health woes.
ksmatthews: Still thinking of you. I am so sorry to hear about your friend Janet. It is just so sad.
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husker-I've been to some zumba's and i feel like a 5 year old in my first dance class...totally uncoordinated, but it is fun.
KS-I am sorry to hear about your friend.
Penny-you go girl! I think it might be fun to do the Komen 3 day walk sometime. But I guess I better walk more than two miles a day on the treadmill!
Regarding vitamins-I agree it is overwhelimg to decide. I did not take much of anything during chemo, due to conflicting reports, so decided to be safe. I had low D also, and was taking 60,000 per week. Mine is now 86, so they have switched me over to just the D3 version which is better for us, but D2 increases faster, I believe.
I take CoQ10 for the heart, to help offset herceptin problems. Biotin for hair (2500 mg per day). I have DIM, but take it sporadically. Same with Turmeric.
I also take a calcium/magnesium blend (2:1 as recommended by my doc for best absorption. I take it at night as magnesium can help with sleep also.
Vitamin E- PS has me on it to help prevent capsular contracture.
Finally-regarding fish oil and the 4 pills-my bff and her husband (nurse practitioner and doctor) went to a conference on supplements. They said if you want to help your heart, you have to take four pills or you might as well not bother. That was the information presented at the conference.
Sometimes I just cant take another pill.
I really like making a green juice drink in the morning. I put in a handful or so of organic choped kale, and then whatever I have that sounds good....an apple, banana, blueberries, strawberries, etc. It is refreshing and starts the day off nicely0 -
My primary told me to start taking the CO10Q. I had never heard of it till then, also I have had alot of advice to take fish oil.
I too am so tired of taking pills though...
My daily pills include iron, vit d3, coQ10, blood pressure, protonix, calcium
I hate taking this stuff! 0 -
Happy Birthday Penny!! Your pics are amazing! Glad to hear your let your doc know how it is about your upcoming trip-way to be firm with him!
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Fluff, interesting on the fish oil, the bottle only says to take one per day, but cardiologist told me to take 4. I have the heart dysfunction from herceptin. I will ask her about doing the coQ10. Interesting that she did not tell me to take fish oil, I started taking one per day because the PCP had told me to after chemo and sx. But when she heard I was taking one, she told me to increase it to 4. Maybe that dose is a specific heart benefit vs. whatever taking one would do? It's all so confusing. Have a great Sunday everyone!
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Kay, I think they specifically told me the conference folks said 4000 units so whatever combination it takes to get there.
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Penny - Happy birthday...sounds like you had a great one ((hugs)).
Kristy - I started a zumba class and really loved it. I think you will be able to keep up, for me the first couple of times i felt like a fish out of water, but the more i attended the class the more i got the hang of it. Like Penny said just sit down if you feel winded or can't keep up... Wow one year since you got the dreaded bc news....2012 is going to be a great year for us all.
Ksmatthews - so sorry about Janet.
Kay - i pray that your heart gets stronger after your are done with herceptin..i think of you often and i pray for your health.
MaxineO - good luck with your exercise routine.
Fluff - i'm going to take your bff's advise and starting taking 4 fish oil tablets per day. I haven't had any problems with my heart, but i am on herceptin.
I have three more herceptin treatments to go, after that i will see my MO every three months for for blood work and labs. I am so looking forward to being done with herceptin. Now i have to decide if i'm going to have another surgery on the boobs since the mx side is larger than the one i had lifted. Right now i just don't know if i want another surgery, but i do want the boobs to match a little more than they do now.
To all my March 2011 sisters - have a great Sunday and enjoy your week.
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I had a visit with my newest doctor this week...a cardiologist. There is some concern about developing cholesterol issues, etc. because I am on zoladex which drives me instantly into menopause...apparently hard on the heart. Well, I just wanted to share that this doctor confirmed the positive effects of the anti-Cancer diet!
Kay, I know you and a lot of us read that book and have been trying to follow the rules. The cardiologist even commented that the Mediterranean-type diet is both heart healthy and anti-cancer. Just wanted to share because it was nice to hear a doctor recommend this approach...my others so far have been unwilling to comment on diet.
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Hi All! I hope you are all doing well. It is cold here...we got zapped with 7 inches of snow yesterday. I have been very lazy...stayed home and even skipped my workouts (the shame....).
It is great to hear some doctor's praise Anti Cancer. It seems like most don't have any dietary advice. I am still looking for a naturopathic oncologist in my are. I found several but it's about a 2 hour drive. With a little one I have to get to/from school that may not work. I am still trying to follow anti cancer as much as I can but I have loosened up a little. I am back to cooking and blogging...if you want some new recipes I added a few to my cooking blog last week. We are also eating vegetarian a few nights a week - lots of lentils, quinoa and beans. I am getting creative with salads...adding more dried fruits and nuts for extra punch. If anyone has any good anti cancer food finds they would like to share...feel free!
Just think about where we were this time last year....at this point I had already had a lumpectomy and was waiting on my BMX. My BMX was Jan 27th. I was a mess. I feel so much better now. I am still having some healing issues from my surgery Dec 9th - stomach incision won't completely heal and part of my left areola graft is failed and is healing slow. I am in the home stretch though...nip tattoos in spring if all goes well from here. How much difference did one year make for you? I hope you are all in a better place than where you were when I officially opened the lounge. Can someone put a good sign on the juke box please??!??!? It's too quite in here!
Hugs!
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Here's one I've been meaning to play by Bon Jovi:
"It's My Life"
This ain't a song for the broken-hearted
No silent prayer for the faith-departed
I ain't gonna be just a face in the crowd
You're gonna hear my voice
When I shout it out loud
[Chorus:]
It's my life
It's now or never
I ain't gonna live forever
I just want to live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just wanna live while I'm alive
It's my life
This is for the ones who stood their ground
For Tommy and Gina who never backed down
Tomorrow's getting harder make no mistake
Luck ain't even lucky
Got to make your own breaks
[Chorus:]
It's my life
And it's now or never
I ain't gonna live forever
I just want to live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just want to live while I'm alive
'Cause it's my life
Better stand tall when they're calling you out
Don't bend, don't break, baby, don't back down
[Chorus:]
It's my life
And it's now or never
'Cause I ain't gonna live forever
I just want to live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just want to live while I'm alive
[Chorus:]
It's my life
And it's now or never
'Cause I ain't gonna live forever
I just want to live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just want to live while I'm alive
'Cause it's my life!0 -
Great song Silia
Its hard to imagine snow when its over 100 here.
I have slipped on the diet a bit too - must get back to that after holidays - its hard to take much fresh food camping.
I have a late Xmas party for all my employees, contractors, colleagues at my house today. Had to postpone it because of late November surgery. Around 50 people coming including a bunch of kids. Bouncy castle set up in the back garden. Thank goodness for my DH who is much more domestically capable than me. He is cleaning the house at the moment!
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Penny I am jealous you have a bouncy castle and warm weather...my little one went sledding with Daddy today!
Silia - great song. You need to turn it up loud and lip sync and air guitar to that one!!!
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Maria, 7 inches of snow? Penny, 100 degrees? Crazy, isn't it?!!
Silia, love the song and the singer. He's a cutie in a bad- boy sort of way!,
Going to see Blue Man Group in Omaha tomorrow. Hoping the weather stays decent. Supposed to be icy tomorrow.. Really don't need the messy roads to ruin our day.
Spent today with my parents and sister at a 60th anniversary party for my dad's cousin. About 200 people, most of them cousins and many I didn't know. Can you imagine?? 60 years of marriage? This cousin and her daughter sent me cards every week when I was doing chemo. Her daughter had BC 15 years ago and is so nice even though we don't know each other well. It was just a nice day and good to see relatives at a happy event instead of a funeral, which is too often the case at their age.0 -
Dear Friends,
I hate to be the one to bring bad news to the new year but I have gotten some progression. I just came from the onc office and will be discontinuing the H and moving on to a combo of Tykerb and Xeloda. Both of these are pills and will arrive in the mail in a week or so.
Existing lung and throat mets and chest lymph nodes have increased in size and activity. No additional mets and the liver remains clear and is still growing back. So not horrible but not great either. This is the first scan that I haven't went in a good direction-I just thought I would be at the very least stable-- never dreamed it would be back this fast. Never even got to my first cancerversary.
The thing that pissed me off the most-this is the most "ME" I have felt since we started this crap a year ago. I started 2 new meds last week that really just made me feel great. A giant potassium pill and a drug called Concerta (which is actually 12hr Ritalin). I only got a 30 day supply of my new best friend Concerta but I may see if he will give me an additonal 30 days as a "pity pill". He gave them to me last week when I told him the fatigue was hanging on from rads to the point where I just was sleeping and working=and eating cereal because I couldn't face cooking and dishes..I haven't felt bad just TIRED late in the day. I have never taken any kind of anti anxiety of anti depression-never felt like I needed them so I don;t know how they make you feel but these suckers are wonderful!! I highy recommend them. Did I mention they kill my appetite and I have lost 4lbs this week?
So because I have felt so good I re-fied my house to a shorter term, organized 2 nice vacations and was going today to buy a beat-up convertible to drive around this summer. Instead today i went to the oncs office where he teared up he was so upset-he probably tells people bad news every day but I am his pet so it maybe hurt more. He told me go ahead and cry if I wanted to but i told him til he starts stocking better tissues--no thanks. I didn;t want that mess all over my hands!! That made him laugh.
We will re-scan in 2 months to see if it's working--meanwhile somebody put me something nice on the jukebox please...
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Lilylady I am not good at loadiing the jukebox, but I am good at praying and sending positive energy your way.
Sorry to hear of the progression.
I hate cancer!!!
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Lilylady,
Sending thoughts and prayers your way. While this song doesn't exactly fit, I have always liked it. It is "Go the Distance" from the Disney version of Hercules. Michael Bolton sang it.
Go The Distance lyrics
I have often dreamed
Of a far off place
Where a hero's welcome
Would be waiting for me
Where the crowds will cheer
When they see my face
And a voice keeps saying
This is where I'm meant to be
I'll be there someday
I can go the distance
I will find my way
If I can be strong
I know ev'ry mile
Will be worth my while
When I go the distance
I'll be right where I belong
Down an unknown road
To embrace my fate
Though that road may wander
It will lead me to you
And a thousand years
Would be worth the wait
It might take a lifetime
But somehow I'll see it through
And I won't look back
I can go the distance
And I'll stay on track
No, I won't accept defeat
It's an uphill slope
But I won't lose hope
'Till I go the distance
And my journey is complete
But to look beyond the glory is the hardest part
For a hero's strength is measured by his heart
Like a shooting star
I will go the distance
I will search the world
I will face it's harms
I don't care how far
I can go the distance
'Till I find my hero's welcome
Waiting in your arms
I will search the world
I will face it's harms
'Till I find my hero's welcome
Waiting in your arms0 -
Oh lily! I can't believe that you have to deal with this setback. This stinks. Your Onc sounds special - that helps I suppose. I truly hope the new drugs don't hit you too hard in terms if SEs and that they shrink everything pronto. Sending hugs to you. I'm putting "I Will Survive" on the jukebox. I've always loved the original but in Cake's version they curse, so that's the one I'm playing.
Thinking of everyone. I was just telling a couple of women today that I wouldn't have survived last year without all of you!0 -
Today marks 1 year from my BMX. So much has happened in a year. I can't believe it. I still think of my lizard lounge ladies all the time.....I can't tell you how much comfort and hope you have all brought me since I opened the lounge almost a year ago. I could never have gone through this and still found a way to laugh a little without you girls. I have loved the fact that we could share the deep, dark secrets of chemo that no one wants to talk about (you know....constipation and things like that:) I guess I am just getting all emotional today since it has been a long year. I am blessed to have found you wonderful women to make the darkest part of my life so much brighter. THANK YOU for that. I wish there were no miles between us so we could all meet up.
Lily - I don't even know what to say. I was devasted when I read your post last night....I couldn't comment. I have been trying to collect my thoughts and have been thinking about you all last night and this morning. You have been dealt some bad cards for now but I hope these new meds change your hand quickly. I am glad you have such a caring doctor that is in this with you for the long haul. I remember when you were so worried before your scans several months back and then they came out great. I am going to only think optimistically about these new meds and your next set of scans. Whenever I hear the song "Fireworks" on the radio- I think of you
I believe you put that in the juke box once....so back at you girl! I am putting it on super loud right now just for you. I wish I had the right words to say...sorry I am rambling. Just know you are thought of often, in my prayers and cared about greatly. Hugs!0 -
Lilylady-I am so sorry you are going through this. It's just not fair.
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Lily lady, I am so sorry your scans weren't better news. I will be praying for you and sending lots and lots of good thoughts. As always, you're looking at the bright side and dealing with the news. You are one strong woman, and you'll overcome this. I am sure the next scan will be better.
I am also devastated and shocked. You'll be in my thoughts and prayers constantly. I wish I new what else to say or do. Stay strong. I am wracking my brain for another song for you. As soon as I get one, I'll post it, but know that we're all here for you.0 -
lilylady: I am so sorry to hear this. I'm glad you have an onc who cares about you; I know he will do his very best by you. I am hoping, hoping that these new drugs knock back that nasty BC. Sending you lots of prayers, hope, and good thoughts.
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Lilylady: I am so sorry to read your news...positive thoughts and prayers to you...be strong
Today I am a ONE YEAR cancer survivor and I don't have to tell any of you what I went through in 2011 !!! ...you all understand. I spent Wednesday at Mayo Rochester...my ONC there confirmed that I am "on the list"...along with 500 other breast cancer patients...for their experimental vaccine to prevent recurrence...it currently has been slowed down by the FDA...they will take only a small group to begin with so my odds aren't really good but hopefully if things go well, the trial will be expanded. We all need to remember there is HOPE !!!
Met with a GYN surgeon who agreed to take out my ovaries and tubes even though I'm post menopausal...mom had breast and ovarian cancer. My ONC and OBGYN originally thought I was crazy to pursue this but the procedure can be done as an outpatient/laparoscopy. A medical geneticist recommended preserving some of my DNA for the future...they are on the verge of identifying new genetic mutations etc. that may help my daughters.
A week of many MD appts...New Years Resolutions=more exercise= probable torn rotator cuff...saw an ortho and had a MRI on my shoulder today...waiting to hear the results...ugghhh
Thinking of you all !!!
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Stilts congrats on your one year!!! I wish you many, many more!
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