March 2011 chemo-lounge
Comments
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lily-I just logged on for the first time in a month and was so shocked to read your news. I am sending all positive energies your way. A person in my late oncologist's yoga class had a brain tumor years ago and had the gamma knife. She said it saved her life. I hope it is what will work for you.
I will keep you in my daily thoughts and prayers and check in here often. Please keep us updated. I know it is so hard, but we can take the bad news and are happy to listen to anything you don't want to vent to your family. I know this board has served that purpose for me more than once. None of my family has reD anything on here, and I plan to give them my password and info if anything should happen to me. I hope it would provide some insight to them
Much love coming your way....and I'm in Indiana, so if you would need a reasonably close person to come over, just let me know.
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I have gotten myself to a better place mentally and the pity party is over. This whole thing really threw me for sure. But I have done a few things that 2 weeks ago I would have thought "What's the use?" I planted a bunch of purple tulip bulbs because I am so sure I will be here next May and went to the dentist to get my teeth cleaned and even bought a whitening kit. The way I was feeling I wasn't sure I even wanted to buy anything more than a travel sized tube of toothpaste. My head was just so full of dark thoughts. Now I am thinking all I need ia for this chemo to work and get a few brain things zapped and I will be good to go.
I have Gamma Knife scheduled for Nov 4. I have 3 different doctors to see this week-back to cancer being like a full time job! Neurosurgeon, radiation oncologist, and primary care doc for a physical. Neuro people have asked me to voluntarily give up my drivers license!!! Told them not a chance in hell. I have zero symptoms so they can't do it without my consent...which they will never get. If I don't feel right about driving having or not having a license isn't what would make me stop. Geez-give me a little credit.
Thanks for the support. As always I knew you were the people who would help me get thru this
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You go girl!
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I'm not at all surprised you've gotten yourself to a better mental state - that's what you always do, lilylady! Awesome. And it's understandable that you had a rough patch processing it all. Let the Gamma Knife work its magic. Of course you would do the right thing and not get behind the wheel if you know you're a bit "off" one day. Best of luck with this week's appointments. Made me smile to hear about your purple tulips. We need to get some bulbs and plant them in the next few weeks... Keep us posted! Big hug.
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Well on November 4th we will all be thinking of you and praying for you Lily. Please post an update when you can as we will be waiting to hear how things went. I hope for great results and a speedy recovery. I want to see pictures of that spring garden when it blooms!!!0 -
Big meltdown yesterday. The neurosurgeons office called to say they didn't have any appointment times available before my procedure and he'll "Just see me there next week." The radiation oncologist called to say he wasn't going to be able to do my procedure so he gave it to another person-and by the way they don't have time to see me either. So pardon me if I thinks that's a big hairy deal that the 2 people who are going to fry portions of my brain will have never met me before they attach a cage to my skull and shove me in a room!!
I told the neuro scheduler I had a list of questions because of the 3 scans they have done the reports say the measurements are way different, the affected regions described are different, and they describe wether or not there is fluid accumulating. I also told her I have spent more time at the foot doctor describing infected nails than I have talked to anyone about my brain-just doesn't seem right. She said they do this every day and she thought I should be happy at not having to see another doctor with everything going on.
I sent them all a fax saying they will not be giving me any kind of sedation until I have met and discussed and had all my questions answered. Or I will just leave. Craziest thing I have ever heard of. Neuro guy wants me to take steroids and anti-seizure that he ordered at my pharmacy-also crazy that someone I have never met is prescribing drugs for me. When I called and told them I am already taking Lyrica they said well you can't take the anti seizure drug we have prescribed until you wean off the Lyrica. So I am not taking any of their stuff. I have a call into my Onc to have him relay that message. They don't seem to have time to talk to me so why bother calling them.
Glad to have got this off my chest. I haven't told family and friends yet so can't rant to them.
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This is ridiculous Lily! Very half assed... I was reading it thinking "call your onc" because I know he's been pretty wonderful to you throughout and then I read "have a call into my onc". Hopefully he and his office can reason with these specialists. Makes me wonder why some of them went into their business - where's the compassion?!?!?!? When are you thinking you'll tell your family? It's got to be a lot to hold in. Rant freely here (but you know that already - lol!)
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Good for you for putting your foot down! I don't blame you at all. I am so sorry that even scheduling this has caused even more stress. Keep pushing to get your questions answered. I would not let anyone touch me until I had my questions answered either. Hugs!!0 -
The medical staff seem to act like your having nothing more serious than a tooth extraction. Shame on them. it's more than reasonable that you would have questions and they should be open to discussion prior to the procedure. Sounds like they're not used to assertive patients, Good for you for sticking to your guns. Hope your onc can help, too.
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I'm here working and listening to Pandora radio. Just heard this song by Rascal Flatts (country). I hadn't heard it before but the lyrics made me think of us and especially you Lilylady with what you're dealing with right now.
STAND
You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless, like you've lost your fight
But you'll be alright, you'll be alrightCause when push comes to shove
You taste what you're made of
You might bend til you break
Cause it's all you can takeOn your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, then you standLife's like a novel with the end ripped out
The edge of a canyon with only one way down
Take what you're given before it's gone
And start holdin' on, keep holdin' onCause when push comes to shove
You taste what you're made of
You might bend til you break
Cause it's all you can takeOn your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, yeah, then you standEvery time you get up
And get back in the race
One more small piece of you
Starts to fall into place, yeahCause when push comes to shove
You taste what you're made of
You might bend til you break
Cause it's all you can takeOn your knees you look up
Decide you've had enough
You get mad you get strong
Wipe your hands shake it off
Then you standYeah, then you stand
Yeah, baby
Woo hoo, woo hoo
Woo hoo, woo hoo
Then you stand, yeah yeah
Read more: Rascal Flatts - Stand Lyrics | MetroLyrics0 -
that is a great song to put on!
Lily-I am relating to your doc experience. I just met with the person who was one of my options to see after my ONC's recent death. I now am well aware of how lucky I was. I asked the guy (who has a breast specialty), how many patients were BC patients and he said a lot. At one point during the conversation, he asked what I did and if I was in the medical field because I was so knowledgable. I felt like I knew more than him on BC stuff. He's off the list and I will be interviewing a few others over the next six months. He can stay my Onc of record for the moment until I decide.
Keep us up to date on how things go. I wouldn't let them mess with me until I had answers either. Sheesh, they should at least be able to call you.
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Its disgusting Lily - not to mention negligent to be prescribing medication without even knowing what you are on. As if its not all hard enough without their nonsense. Threaten to sue them if they don't get their act together! Hoping your onc will sort them out.
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Happy November everyone!
Lilylady-I'm so sorry to read about everything you are going through. I know you are very strong but I am happy to see you coming here to talk about how you are doing. You will be in my thoughts and prayers!
Penny-Your trip sounds amazing! I am so happy you get to see and do such fun things. You are quite the adventurer. I can't wait to hear about it!
I am turning 40 this month so we went on an early birthday trip to London, Paris, and Bruges, Belgium in October. Never been to any of them before, so this was a huge deal for me. Loved the trip and had a great time, but we had to laugh when we got to Paris. We went to see the Eiffel Tower at night and they had it illuminated in PINK LIGHTS for BC awareness!! I went on the trip to forget about all of this and there it was right in my face on the Eiffel Tower!
I've been having cysts on my ovaries on and off for almost a year now, which I blame on the Tamoxifen but of course the oncologist disagrees. I have been having them monitored, had a CT scan right before my trip (that really stressed me out) and they are now really big so the oncologist finally agreed it would be a good idea to remove them. When I had my hysterectomy about a year and a half ago I asked them to take them ovaries out and the doctors convinced me it was a good idea to keep them since I was "young" but obviously they were wrong. So, it looks like a surgery in my future. I just need to decide when to schedule it.
I hope everyone is doing well. We got our first "cold" weather here and I love it. Happy Fall.
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Lilylady - I know tomorrow is supposed to be the Gamma Knife. Have you been able to talk to the docs or will that be tomorrow morning. We'll be thinking of you and wishing a phenomenal outcome!
Colodisney - So sorry you're dealing with the ovary cysts now. How annoying that your instinct was to remove but they talked you out of it... Arrrggghhhh...
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Colodisney. - I had my ovaries out about 2 years ago because of the cysts. It was not a big deal. I had my cysts monitored and they never went away. Mine were there before all my BC stuff started so tamoxifen didn't do anything with mine. Good luck! LOL at the pink Eiffel Tower!!! Too funny! I hope you managed to get at least 1 picture of it without the pink!!!
Lily - If tomorrow is the day.....just know we are supporting you all the way.....as far away as Australia! I will be praying for you tomorrow and waiting to hear an update on your condition when you can. Hugs!!!
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lily-sending healing energy and positive wishes your way. We will lift you up!
Colo-I don't know how they did your hysto, but I bet they can do this one with the little incisions. If I had a hysterectomy, they would have done it that way also. My fibroids (and I have a couple of big ones) did not change on tamoxifen.
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Thinking of you Lily, - good luck for today. Its fantastic - just think that by the end of the surgery they will have zapped them all.
Colo - sorry you need more surgery, love the story of the pink Eiffel tower - I so hate pink anything! I tend to think traveling in Europe is more adventurous (and potentially stressful ) than anywhere - so many languages and so many people! I guess its because we have so much space in Aus, I get freaked at large crowds.
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Colo,
Before they do any surgery you need to look at this power morcellator thing that is going on. They are attempting to remove fibroids and cysts thru the small openings they like to do. They stick this little blender thing in there and grind down the larger ones so they can be taken out. Women with undiagnosed cancer then have these toxic pieces flung all over and become metastatic. Small percentage but the lawyers are hopping on the bandwagon. Insurance companies are still pushing for this because it is way cheaper than doing an old style open incision. Shorter hospital stay, less risk of infection ect. There is a push now that the morcellator thing be done with a bag around it to catch the small pieces as they are ground down.
If you just type in the morcellator thing you will come up with lots of hits. Don't want to alarm you but just wanted to make you aware of it.
Your trip sounds amazing-and why not pink lights? Bet it was pretty.
I did have my Gamma Knife today. The head frame thing wasn't all that much fun. And the news wasn't great. Instead of just treating the 1 they knew about the special MRI showed 6 total and they were scattered in just about all the different lobes of the brain. None of them were huge but they suspect with what they found there will be others that will have been too small to see. Kind of like a seeding thing. They also recently changed their ideas about treating no more than 5-they now have studies saying that treating up to 10 at one time is really not much worse than doing 5
So instead of the 10 minutes they had planned I got 81 minutes of continuous radiation. Getting bolted into the machine was freakish and I kept thinking I couldn't do it but once they moved the table enough that my head was closer inline with my body it was OK. I actually fell asleep at times so deep that my oxygen levels dropped to nothing. They kept yelling into the microphone to wake me and make me deep breathe to get it back to normal. She also told me I snore-and she had taped proof of it in case I didn't belive it.
I will have a follow up apt with the neuro guy in 2 weeks and if I have no seizure or any problems I will get to discontinue the steroids and the anti seizure stuff. I will see the rads guy Dec 29 immediately after I do a follow up MRI. They will do the scan and I see him right after.
All in all not too bad. I went to DSW to treat myself to a new pair of boots followed up with some good Chinese. Got my PJs on and just watching trash TV.
I thank you so much for your thoughts and prayers. You are my peeps!
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Thanks for the update Lily...sure been thinking about you. It is amazing the power of shopping therapy on the soul. Chinese too. You know just what you need!
Kristy
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Gosh, lily, to have that procedure and still have dinner and give us an update. You are amazing. You are most definitely in my prayers. Rock those boots! God bless.
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Lily-You are amazing! I can't believe you went through all of that in a day and then had energy to shop for some boots. I hope you are feeling good today. I will be thinking of you!
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You crack me up Lily! Who else would pick up some boots and Chinese after Gamma Knife??? No one else I know! You rock girl and YES...WE ARE YOUR PEEPS! Always will be too! Hugs!
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Lily...holy cow. Not even a Valium? You are Wonder Woman. I always tell them I am claustrophobic just so they prescribe one, lol. Figure it can't hurt to be a little calmer.
Retail therapy, nothing better! Although for food, I would have liked a loaf of French bread with lots of butter, some ice cream with hot fudge, and maybe a burger for some protein.
Glad you are home relaxing.
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Serious respect Lily! you are amazing. Gamma knife, new boots and a Chinese all in one day. so what have you got planned for tomorrow?
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It really is just like they said in th brochure-you get out of the chair and resume your normal life. So cut the grass for the last time hopefully, took my mom carpet shopping, and fixed cabbage rolls for dinner.
I am thinking at some point some fatigue will set in. Those of you who did rads will surely remember how it made you so tired towards the end. I swore I would never do them again. The 81 minutes I got Tuesday is more than I did over 25 tx way back when.
I am doing serious research into retiring-this whole brain thing has me thinking it is time. Spring probably. Plotting on how I can start spending my siblings inheritance-that would make the retirement worry free as far as money goes.
Thinking of you going into nice weather Penny-very jealous- as I knit caps for my bald head for the upcoming winter.
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Hi everyone! I hope those of you in the cold weather are staying warm! It was 74 degrees and sunny here this afternoon. Can't complain about that!
I hope you all can help me with this. I have been on Tamoxifen for over three years. I have had a few hot flashes since then, probably a few a month. Nothing too bad. Then all of the sudden in the past month or so I am getting multiple hot flashes a day so bad that I have to change my clothes because I am sweating so much! UGH! It is so frustrating. I can't figure out why it's happening now all of the sudden. Any ideas?
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Colo, I don't have any ideas, but that is how I spent three years on Tamoxifen. Were you in menopause before? If not, maybe you are going into it. I will say the one good thing about Arimidex is that surprisingly, my hot flashes are much less.
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I get hot flashes and have learned to wear clothes made of cotton rather than polyester, rayon and other synthetics. The cotton allows my skin to breathe better. I also wear v-neck shirts rather than round or collared ones, the collars really hold in the heat. I keep a sweater nearby because I can be overheated one minute and a bit cool the next. Most of my shirts are short sleeved, even the 3-quarter length can sometimes be too warm. In the house, I go barefoot. I've also found keeping my hair above shoulder length keeps me cooler. Last winter my hair was down to my shoulders and I learned it trapped in the heat around my neck. If you have longer hair, you could always pin it up off your shoulders.
Some women combat hot flashes by taking effexor, tho I don't take it because I learned that the anti depressant make me sick. Hope you find some relief.
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I am still on tamoxifen even though I had my ovaries out. I have bone density issues from the chemo so I can't go on an AI right now. I do get hot flashes, but I notice it also gets worse when I change my diet. When I eat sugar foods or things I normally don't eat made with white flour, I notice more hot flashes. When I stick to my healthier diet, I get less hot flashes. Just my observation. I am also on Effexor.0 -
Hi everyone! Lily, you're unbelievable. You rock girl!
Colo, I agree with Maria, when I eat more sugary foods or white flour, I get more hot flashes. Sorry to say but the same is true with drinking. I haven't had the kind you describe since I finished chemo though. Hope it gets better for you.
Putting on Did you ever know that you're my hero for Lily. Lily, you were inspiring to me back when we all went through treatment with your attitude and your work ethic and your garden. Sending you all my best thoughts and wishes and hoping that this treatment is easier on your, but tougher on the cancer. ((((Hugs))))
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