March 2011 chemo-lounge
Comments
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Lilylady...that just sucks. but please think about keeping your onc appointment. She needs to know your greatest fears and frustrations now, and how devasting this news is. I hope she can put things in perspective...4 pinpricks that could remain there for years...or tell you straight up what is in store.
Do you have someone to go with you? When you do go, have someone with you. This is not the time to go it alone. And you know we will all be with you too. Sending calming vibes and hugs your way. And get the happy meds. You need something to get you through the long days and nights ahead until you have a plan in place. No shame in that. I luv my happy meds.
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Lilylady - OMG I am so sorry to hear what the lung surgeon said about the surgery..that sucks!! I know how you were so looking forward to getting that cancer mess out of your body. YES, you are a strong woman but it is perfectly ok to meltdown when you feel the need to..this is one of those times, also a meltdown is good for the soul sometimes. You know you can meltdown with us gals anytime :-). I agree with the ladies please keep all of your appointments. ((Hugs))
Kymn - I understand what your acrynon meant...LMAO :-)
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Kymn-I totally get what your acronym meant! It made me laugh.
Huskerkkc-Congrats on finishing rads!
Lilylady-Please don't feel bad about crying. We are here for you!
Today I finished 31/31 rads and my youngest started Kindergarten this morning. Two things that I never thought would be happening on the same day for me. It has been a very emotional day.
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Lily...that just plain sucks. Is this common in stage iv? Did you ask other stage iv gals? I would feel the same way and want surgery too. I think for a long time we all focus on getting through treatment each step of the way and then the reality of living after treatment sets in. This part is really hard. I agree with gettting happy pills. I still can't go to bed without xanax because night time is when my mind goes to too many scary places. Let us know what your onc said. You can meltdown and vent here anytime. We will always listen and not be offended by four letter words (yes Kymn....I also understood!!!).
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Lilylady: you are in my thoughts and prayers...we're all here for you...
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Kymn: finally figured out your acronym
...I'm a little slow with those, though...chemo brain !!!Lots of MD appts. this week...will be starting the first of 35 rads on Monday morning and got my Rx for Arimidex. My port will come out on Sept. 8th. Feels kind of strange that I don't have another ONC appt. for 2 months...actually I'm at the stage of being TERRIFIED that this crap will come back ...guess I will have to keep Penny's quote handy about how to live and not worry so much...
I like this...(from St. Jude Children's Hospital)...
WHAT CANCER CANNOT DO
Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit (Anonymous)
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Colodisney..Congrats on finishing rads...great feeling huh! How did your skin hold up? And then your baby going to kindergarten...harder for mom than child . Bet he ( she?) loved it though huh!! I cried for all 3 first days of with kiddos . Cried after last treatment of rads too. Surprised the heck out of me. What a journey.
Stilts...best wishes as you start rads. Hoping you have an easy time of it and don't have to travel far. Not hard, but a daily grind. Wish I was getting my port out! Onc says three years because of triple negative status. NO. WAY. RO said after rads were done and BS said whenever I'm ready. I see him in Nov and am thinking will try to schedule in Dec while deductible is met and major medical is still paying 100%. great saying by the way. Someone sent that to me and it was very moving.
Lilylady...been thinking of you all day. Update us when you can. We are all worried about you and are in your corner.0 -
I saw my onc yesterday. I did deep breathing hoping to keep under control. he opened the door to the room and I just started bawling.He let me cry on his shoulder for the longest time. I think he was shocked because he has never seen me other than 100% positive go go go.
He asked me to explain what I was feeling and why. I told him my goal was never to see him again. he laughed and said "We are as good as married, you will never be rid of me!" He also said why ruin a beautiful fall by getting 2 major organ resections. Enjoy yourself and when they grow back we will revisit this maybe in Jan or Feb. He said he uderstands my diappointments but this is the best course to take and remember i have 4 tiny pindots of cancer left and what isn;t good about that? WE will be doing scans every 3 months and now include bone and brain-so we will keep a close eye on it. He had a patient die this week-my age-I saw her obit in the paper that morning before I saw him. I know he was thinking I should be grateful-and I am-I just wanted to be NED. I wanted an end.
Anyway he thought he was doing a great job but do any of the following make YOU feel better?
1-you will see your MO the rest of your life
2-your cancer is expected to grow back in less than 6 months
3-you will get lots of scans including ones to other places your cancer can grow
4-pindots or not-you still have active cancer after full chemo and BMX
That was how my head broke down what he was saying. I have accepted that this is how it's going to be and I am moving on. I see an RO Sept 2. I told him don;t send me to a guy who says "38 tx-see you later" or I will not do them. He has picked a guy that has extensive training in alternative and holistic healing-not sure how that meshes with frying somone with radiation but I am going to talk to him. I am armed with all my research papers and i hope we can have a discussion.
Like I have said before it doesn;t matter what stage we are-we all have BC and we will all have to learn to live after TX. I believe no one gets real peace of mind once they have had this. This might be the hardest part of the whole thing.
And I am still draining. saw the BS again yesterday-3rd time in a week and she took out a huge amount. It had went down the 2nd time but had went right back up to the amount she got the first time. So back to her again on Tuesday. They have stuck me 12 times in the same little area in 1 week. She keeps telling me that should all be numb still---ARE YOU KIDDING ME???? does the look on my face make you think it is numb??? The center of my chest hurts way worse than my 11 inch incisions. Plus they got antibiotic ointment on my favorite litle T-shirt and I can;t get it out. My God what a whimnerI have become.
Thanks for the support gals-it means so much
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lilylady: I agree, those aren't things we want to hear, but he sounds like a decent doc. I am really sorry that you are going through all of this. I completely agree that you should get with an RO who is interested in incorporating holistic and alternative therapies. I think that could really help. In fact, I have just read an article about places involving "medical acupuncture"...like the doctors want to take credit now for thousands of years of Chinese medicine. So you know it could work. I also agree that you should think about the 'happy pills'. You are going through so much.
I have 2 more rads treatments, and I have had nothing more than some minor redness to my skin and a little bit of pain immediately after a treatment.
Stilts: good luck with the rads. I go through the terrified stage once in a while. My nipple was really hurting yesterday (my one remaining!), and I was sure there was some cancer there that they couldn't see in the ultrasounds/MRIs. So now I keep feeling myself up to see if I can find a lump. We are all going to have to live with this forever. For better or worse.
Husker and Colodisney: done with rads. yeah for you!
I went for my bloodtest yesterday and they had a terrible time finding a vein. I used to have great veins and donated blood whenever I could. I think I have some cording in one vein in my arm, and all the others are going deep to hide from needles!
Take care all who are in the path of the hurricane. We are having gorgeous weather in the midwest, so it's surreal to think of that crazy storm!
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It seems that the fighter in you is coming back. Glad to see that lilylady. You're right, we're all in this together. None of us knows when or if the cancer will come back and where. It is at least nice to have this place to come back to where we all understand. I have come to believe that as nice and decent and well meaning as they are, the docs will never understand.
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Lily,
The thing that rang truest for me was when you said we all have BC, and we all have to learn to live with it. I'm so sorry you have had the news you've had this week. You are a fighter, and I know you will kick cancers ass! I just think about where you and we all were when we started this, and I think we are not done yet. I had stage Ib cervical cancer, dx'ed in 2008 and thought my biggest fear was it's recurrence, not the occurrence of BC. I was wrong. Take each day for what it is worth, and deal with adversity as it comes. Lily, you humble me with your strength and courage. You are kicking cancer's ass, don't doubt it, you are making a difference in our lives and your own!0 -
Supersally - perfectly put.
Oddly I was talking yesterday on the phone to a dear friend who has very severe depression and I turned to DH afterwards and said - it makes you realise how lucky we are. He looked at me as if I was insane and I could not help laughing when I thought about how ridiculous that sounds after the last 6 months. But I would rather be me than her, and I would rather fight this, particularly with you ladies with me, than have any number of other horrible things, because Stilts quote is right, it cannot conquer the spirit. Lily - your spirit shines through.
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Good Morning ladies, Had an uneventful weekend, just feeling pretty fatiqued from the rads, for me I am more tired doing radiation than I was chemo weird hey. Maybe its just a combo of everything. I too am starting to feel scared about what now, what do I do once I am finished all my active treatment. I get pain in my nipples to sounds like its pretty common but I have to admit my first thought is oh god its cancer again. I guess that just becomes our new normal. I am sure it will ease as we get further and further out from this.I am quite red under my breast from rads and have one little blister, im a bit worried cause I am only half way but will keep doing my best to keep it at bay.
Hope all of you who were in the path of the hurricane are doing well and escaped without any damage.
have a great monday girsl
Hugs Kymn
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Hi Ladies-Well, finished my rads on Friday and had to go back today because my skin all came off under my arm in the armpit area they radiated. It is so disgusting and painful. Got a prescription cream and hoping it heals quickly. Having open wounds isn't fun.
Kymn-I'm glad you mentioned that you are really tired. I am exhausted and I can't believe how bad it is on rads. I thought I was the only one. Thanks for making me feel better.
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Colodisney-I am glad you are finished with the Rads but what a revolting development. Was there any warning sign at all before it came off? How in the world do you get something like that to heal uness you walk around with your arm held out. Did they do boosts at the end? That is one of the main topics I am going to bring up with the RO.
Husker-how much free time does it feel like now that you don;t have the huge drive? I remember thinking I don;t have time for BC back in Feb-oh how naive were we then? My rads place-if I pick this guy-is only 10 inutes away. I heard a rumor that there machine breaks down frequently though.
Kymn-sounds like you are doing well as far as your skin holding up. Since i have no breasts I dont have to worry about that area underneath them.I have been skimming the Rads threads and they are all over the map as far as the best creams to use, how often to apply ect. Any tips you have picked up would be greatly appreciated. I think there are several of us getting ready to start. I see the RO Fri-I hope they start me the following week. I was going to go back to work but I think I will wait til I am done. Seems like the fatigue is a real factor.
I had lunch with 6 other BC.org ladies from the Cincinnati area. It was interesting. I was the cancer "baby" there. I am only 6 months in and these ladies have been doing this for years. One said she has lost her hair at least 4 times. She has a darling chemo grow-out going on right now-she is young so it isn;t gray which helps with the cuteness factor. These ladies were all either Stage IV or multiple re-occurences. As I looked around the table at the variey of turbans, scarves and super short hair one thing really stood out. Not one woman there was sorry for herself or looked anything but bright and engaging and ready to face anything. Funniest thing to me was a whole table of chemo brain people trying to have conversations!!!
After the meal the waiter brought out plates of cookies with candles on them and said he was honored to wait on a such a strong great group of women-wasn;t that nice?.
So, I have cinched up my panties again and put away the tissues-I am going to have that nice fall he talked about. I have lots to be thankful for and I am lucky just like Penny said. When I talked to the NP and said maybe it is time to sign me up for happy pills she said my coping mechanisms are too good to turn to them now. You guys are better than any pill they can give me. Thanks again for getting me thru yet another crisis.
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I go to the Dr tomorrow to get my tattoos and start Rads nxt week. I need tips please!
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ksmatthews-how did your doc decide how many tx you get and are you doing boosts?
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I dont know how many treatments I am having or if I am having boosts. I saw him b4 I did chemo and surgery and at that time he told me 35 treatments. I will ask questions tomorrow. I am hoping since path came back no signs of cancer that maybe he will cut down the # of treatments. I am really ready to get this over with.
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I am ticked about even having to do them. My path was clear, great margins and I have no freaking boob material left. They want my armpit because I wouldn;t let them take nodes. They scooped out some chest muscle also and it was also negative. I haven't seen anyone on the rads threads with less than 30-33-35 tx. There is some sort of math formula but seems like everyone falls into about the same #.
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I had 25 rads - 5 weeks Mon , Fri. Focused alot on remaining lymph nodes in neck as they took 23 out from the axilla. The burn will get better, although its nasty at the time, mine is almost gone now and only slight pink marking left behind on my neck. I found it did not start to heal till around 5 days after rads ended.
I was lucky in that I did not get too tired though. Re skin stuff, I tried pretty much everything, not sure any one thing is better than another, just make sure it keeps greased up not dry. Callendula ointment or emu oil are worth a go.
I have start to get mild lympedema now and have an appointment on Wed, guess they fried my remaining lymph nodes and its got nowhere to go now.
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Lily: that lunch sounds great. I can't wait to meet up with the Chicago ladies at the next lunch. They appear to be pretty active together here. I have not gotten to talk to anyone that is not a newbie like me except one friend that is exactly one year ahead of me.
Colodisneylover; Ouch! I hope you heal up soon! That sounds painful......
Not much new here. I am starting the task of finding all new doctors.....I am going to schedule a few appointments and kind of interview them and pick the one I feel most comfortable with. I don't even know where to begin. The good news is there are two NCI's here in Chicago. I also need to find a new PS to finish my nipples.....ugh! Oh well. We are busy still looking for a house. I am glad to be back to my daily workouts....gives me sanity in all of this. I hope you are all doing well.
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Had an eventful first of 35 rads today...showed up for my appt.,kind of nervous, stripped down, met some of the technicians and then they discovered they had lost my shield for the treatment...as I am having treatments at the hospital I work at, didn't make a scene but I was definitely unhappy...had to come back later in the day and miss some work...but oh, well...I survived #1 !!! 34 more to go (I think 9 are boosts ???) I thought the machine was a little intimidating so I closed my eyes but I guess I'll get used to it !!! Also have started on Arimidex...no side effects yet. Just want to keep this crap from coming back ... Hope you all have a pleasant week....
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Just thought I'd add my 2 cents on the radiation. I am scheduled to have 28 regular treatments and 5 boosts. Not sure how they came up with that number, but it seems it's pretty standard. My RO wrote me a prescription for a cream called Xclair. I am using it three times a day. I can't say how well it's working yet, because I have only had 8 treatments so far. She said it is the only thing I am allowed to use, although I think she would prefer I use nothing. No tattoos for me, but plenty of magic marker. I have so much of it, it's hard to find a summer blouse that covers it all up. They are radiating my breast, axilla and supraclavial (did I say that right?) area. I think they are zapping me from 8 different positions, but I usually loose count. No fatigue yet, but I'm not against taking an afternoon nap any way.
And since I already have mild LE, I am extra vigilant about wearing my sleeve, doing my exercises and manual drainage. I can already tell the rads are making my LE a little worse. I hope it is not a long term effect.
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Jules, I'm having whole breast rads and they put lots of bright blue marker on me, covered by little clear sticky dots. One is right beneath my collarbone, so it is visible with practically everything I wear. For work, I've been wearing shirts with collars on them, it seems to detract from the sticker. I work with elementary kids, some ask why I have that on me. I tell them it's a bandaid. I pretty much hate it, but what can I do. Only 29 more rads to go, and it can't be over fast enough for me!
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KSMatthews-Good luck today at rads! I didn't get tattoos, told them I didn't want them and they just continually used a Sharpie on me with stickers. Once they get you set up, it goes pretty quickly. I think it normally took a total of 10 minutes for me each time. I hope your skin holds up well.
Lily-So glad to hear you are doing better! You are an inspiration to so many. As for any warning about my skin - it just turned very red and then almost black the last few days of my treatments. Then it just sort of fell off. The doctor gave me a prescription and said the worst is most likely over. I am using Salvadene creme now, and had been using Radiagel and Aquaphor at least 4 times a day throughout treatment. I am not fair skinned and tan very easily so I am surprised it was so bad. I did get boosts but they were directly to my mastectomy scar, not my armpit area.
Maria-I hope your house hunting is going well. I'm sure it has to be overwhelming to move, pick new doctors and get settled.
Glad to hear everyone's updates. I'm starting Tamoxifen tomorrow.
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I have my last rads scheduled today! My skin has held up well, I hope it doesn't fall off like yours Colodisneylover! I used an olive oil salve, and I think it reallyhelped a lot. I got red under my breast and along my collar bone, but so far no skin breakdown. They gavve me something calld miaderm, but the olive oil worked a lot better. My sister had also recommended avocado oil.
mdg: PM me if you want some recommendations about Chicago docs. I have been treated at NW.
colodisneylover: I have my appointment to get my scrip for tamoxifen tomorrow. Hoping it doesn't affect me too much.
lily: I am so glad you are feeling so much better. I think we are such a positive bunch that it makes me feel better just reading what you all say each day. And it's great that you met with such a good group of ladies. I am so glad we could help lift you out of your blues. It is a rough road we are trodding, and we will have to continue down the road together.
jules and Divine: Getting rid of this marker is what I am most looking forward to today! I have had a terrible time keeping the marks hidden with shirts, and often just don't care!
I have decided that tomorrow (after getting my rads marker and tape removed!) I will go out without a head covering. I will be able to wear a nice blouse so that I don't feel so boyish. Wish me luck!
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Thanks for the well wishes. I did get the tattoos it was no biggie and they are so small that I cant really even see them. They are just like a tiny, tiny freckle. Because of the NED I only do a total of 28 tx and no boosts. So for that I am happy.
Told me no deo to use baking soda? Also told me they would give me Miaderm lotion to use.
Good luck to all you ladies!
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Once again no continuity across our regions on what to use as far as the creams. I did order some emu oil-recommended by many on the Rads sites and I think Penny said it too. I didn't go for the cheap one Penney-mine is authentic AUSTRALIAN undiluted emu oil. From what I have heard about the Tom's deoderant you may as well use baking soda or constarch. One lady said she puts it in a tube sock and just slings it at her armpit-the mental picture of that seemed pretty funny. I figure to put some in a tupperware and use a puff. remember the kind your granny used to have-the big fancy talcum powder with the puff that always seemed to have a lavender ribbon on it.
Found out today at the BS that I WILL NOT be starting Rads anytime soon. Went for my 4th draining today. Down to 55cc today on both sides compared to the 100 she got Friday. It goes up and down so I am not getting my hopes up. Anyway she said no Rads until the draining is stopped AND the skin attaches itself to the chest. No idea on how long that might take. I see the RO on Fri and hoped to get the tatoos and stuff done next week. She said if that skin is floating loose it will just burn up and slough off-Colodisneylovers description of that is enough for me. I am going to keep my appt-figure it is more of a meet and greet session anyway.
All the info about how many and the boosts are helpful. I am getting some to the supraclavicle area also. Funniest thing to me is they have never brought up the ones surrounding my trachea-maybe that is part of the clavicle thing.
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Forgot to ask-I saw on the Rads threads that they were getting CTs as part of the process. If we have had our cancers cut out why would they do this? I just had 1 Aug 6 so hoping I don;t have to do another. Also, don;t want to find out of the other crap is growing back already.
Did you guys get CTs and did they say they will be doing x-rays thruout and how many times will you see the RO person? I know I can ask on the Rads threads but easier to ask your friends.
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Forgot to ask-I saw on the Rads threads that they were getting CTs as part of the process. If we have had our cancers cut out why would they do this? I just had 1 Aug 6 so hoping I don;t have to do another. Also, don;t want to find out of the other crap is growing back already.
Did you guys get CTs and did they say they will be doing x-rays thruout and how many times will you see the RO person? I know I can ask on the Rads threads but easier to ask your friends.
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