Calling all TNs
Comments
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Happy 1 year Kymn! One year sure can make a tremendous difference in our lives.
Whoo Hoo Hope!!!
How are you today Inmate?
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Hope - Awesome news! I know how hard it was to wait, but the news was worth waiting for!! Time for a deep breath.
Kymn - We do have a new perspective on life, don't we?! We can't undo anything that has happened in the past, but we can choose how to look at our future. Here's to moving forward!
Suze - No fair that you're still in the hospital. I'll be sending positive thoughts your way. Just keep thinking about that awesome cruise coming up soon.
I hope that everyone is having a good day, and if not, that tomorrow will be a better one!
Kathy0 -
Hello ladies!
I haven't posted in a while but I read your posts every day.
Hope...so happy for you! Woo Hoo!
Laurajane...you are such an inspiration to all of us.
Suze...I just finished the scrapbook of our March 2011 Disney Cruise. It was so amazing and given the nasty turn our lives took on June 28, I am soooo glad we did it. You will LOVE it!!!!
Michelle, I agree with you about the radiation techs. I've had so many that I don't even try to remember their names any more. My RO is a very nice man but he's been out of the country since I started my tx. I think he's back now so I should see him tomorrow. Saw my MO today for about 2 minutes! My regular MO is on maternity leave and I really miss her!
Kymn...congrats on getting through the year!
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I would like to repeate what inmate said:
Kym....Congrats!
Hope.....Yippee to crap left over!
Suze....I can't wait to hear about your cruise...:)
Have a wonderful day everyone!
Thanks, inmate!
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TifJ....thanks for asking. I'm hanging in there. I find myself being a bit introspective at the moment but hope that a little house cleaning will shake that feeling. My scan is scheduled for Thursday morning followed by my last chemo. I'm hoping for good results on the scan so I can finally celebrate.
phgraham......you're welcome....:)
Has anyone heard from Bak?
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Suze - hope you are home in a day or two! If you stay much longer I may have to come and track you down!!! (((Hugs)))
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Hope: Congrats on "nothing."
Kymn: Yup, you made it through BC (and a whole of other crap besides) - Congrats!
Suze: Hope you're home soon. Your doc rocks.
Inmate: Fingers crossed for good news. I have a good feeling for you...
Went for my annual breast MRI this morning. God, I hate that. Thought I was going to have a panic attack but managed to see it through without sounding the alarm. Onc appt. next week, so hopefully I'll get the all-clear.
Re the follow-ups, 2+ years from diagnosis, I see my onc every 4 months (soon to move to 6 months I think), BS every 6 months. RO dismissed me after rads as I had enough docs on surveillance. Annual mammo and breast MRI (for now). No other scans unless unexplained, persistent symptoms. No bloodwork other than my annual at PCP.
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Suze, I am so happy to hear that you might be coming home very soon. You are absolutely amazing! Your mind is so sharp and you are so all together that even in the midst of having a fever, anemia and blood tranfusions you are able to write to us with such intelligence and outlook towards life. With that kind of brain and attitude, girl, you can get through anything! I hope you get back home to your comforts very very soon. Are you home yet?
Luah - I am having my MRI done soon too. You are so cool, wish I could be like that. I become a total mess after a test, waiting for the results. I hate the loud noises during MRI. Mine is due in Jan but I have pushed it as far out as possible to Jan 30.
Kymn - A very happy cancerversary to you! Are you counting from the day of diagnosis?
Hope - So happy for your benign news, Yay!!!!!
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yes counting from diagnosis is that what you girls do?
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Kymn, I guess one could count from any day you like, either from the day of diagnosis, or the day of surgery when all the crap was taken out of your body or some even count from the day their treatments finished. In my case, I was diagnosed July 20, 2010, finished surgery July 28, 2010, second surgery to remove all on August 18, 2010, and then due to infection, a clean up August 29, 2010. I finished chemo 12/28/2010, and radiation 03/31/2011. I feel that I should count from when the second surgery finished and the crap came ouf of my body. So I have decided to count from Sept. 1st, 2010, so I am one year, 3 months, 10 days out today.
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Thank you all so much! I don't know how I would have gotten through this without the compassion and support I found on this board. What an incredible group of women you are!
Kymn - congrats on celebrating this milestone!
Inmate - keeping my fingers crossed that all will go well for you on Thurs, and sending positive thoughts your way!
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I count from day of dx.
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Dilemma - do I count from day of first dx or second dx? I think I prefer to count from the day I had a clean PET scan. That's 16 months later than day of first dx.
I saw my RO today and learned that I will not see him again until mid-June. Sounds good to me!
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I count from day of dx.
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kymm,
Wow your post was beautiful and so sureal. I do believe we will also have an ugly gut feeling from first day forward ...
..woohoo to you...I cant wait to get there,0 -
Ladies I read posts every day but am not a regular poster. My anniv date is in 4 days, which was Dx day. I am six months out from PFzc and 4 mo out from rads. It is interesting to read the variety of treatment protocols. My BS wants to see me every 4 mo for two years. I had a clean mammo in Nov. he says I can wait a yr for another. However, my RO wants a mammo every six months. I liked him and his staff aftere dismissing my first RO for being a complete jerk. I drove 95 min one way everyday instead of 25 min to be treated by an ass. He wants to see me every 3 mo for two years- says its protocol. Then the MO also wants me every 3 months. I feel so popular! However they all missed my lymphedema, which makes me mad at all of them. It is mild, armpit and breast instead of arm, but they all should have been watching for it. Learning none of them do.
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Hope..just junk!! Love it!! Junk is good.
DX..I count from DX also...it's the farthest point away..so it works for me...
Good to hear from you Kymn...2012 will be better...
Suze..get your ** home..you have things to do.....(even though the song its a small world drives me crazy.
Luah..hoping you hear the all clear...you too Inmate...
Oh yeah..the RO...I would sit there fully clothed and he would say let me see your breast...ok..whatever...
Have you guys ever read the thread on here "you know your a cancer patient..when."...one lady said that she was at the dentist and started unbuttoning her shirt...
I KNOW that this is their job..and they see alot of us all day long but I do agree sometimes a little more respect would be in order.. My BS always gowns me b-4 exam..my ONC does not..I just flip my shirt and bra up around my neck..I don't like it at all..I think it is kinda weird.
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Husker..tell me more about your mild LE...I occasionally have some breast pain and down my arm..but not in the armpit...my ONC told me to expect this..but I still wonder about the LE..
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Husker- The same thing happened to me with my LE. From the 2nd week of rads my forearm started to swell a bit and hurt too. I showed my RO and asked if it was LE and he said no. When I met with him at the last rad session I showed him again and told him I was about to take a plane for a vacation in 3 weeks time and needed to be sure it wasn't LE or if it was that I needed a rx for a sleeve. But he told me that it wasn't LE and that I didn't need a sleeve for the plane. In the plane ride, my arm was hurting and when I got to Florida my truncal LE flared up and I couldn't wear my foob because it was hurting to much. That was last July. When I saw my nurse in August I showed her my arm and right there she said to me: " You have LE". It's about time someone noticed!!! She told my onc and he prescribed a sleeve. Because it wasn't diagnosed in the beginning like it's supposed to be, now I have LE in my arm (forearm and above the elbow), my hand and truncal too. It's considered mild though, about 4-5% but still, it can be very annoying at times.I have to wear a sleeve, a glove and a compression bra. Having to wear all these compression things can be very unconfortable and very expensive! My DH jokes with me that I should do like Lady Gaga and wrap myself in latex, then I would be all well compressed.
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Titan & Babs,
I finished rads the end of August. My surgery (lumpectomy) was in Feb 2011 and I had SNB with 3 nodes removed (all negative). BS told me I did not have to worry about LE; in fact, I could get BP's, etc. However I could not get a single nurse to ever draw blood or do IV on that side (thank god). I saw RO and BS in Nov and had a mammo, plus thorough (very) exam. Nothing. I was in a 12 wk support group and a PT and OT came to our group. I was gone that night, but everyone was talking the next week about how they had no IDEA anybody could get LE at any time, even years later. I had been complaining that my bra seemed tight on one side, even though I had lost 20 lbs since tx began. Also was having some range of motion issues, from either rads and/or surgery. I couldn't figure it out, just figured I had swelling but it never DAWNED on me I could have LE. Gal in group suggested I get an eval, so mainly on a whim I did. And I had LE around incision site (she could tell by redness in the area) and in armpit, marked by tightness/swelling. The OT was sooo upset that the surgeon had said I didn't have to worry; she practically had tears in her eyes, was sooo glad I came when I did, etc. I don't need to wear a sleeve except to fly, but she is suggesting a compression cami and/or bra. Am trying right now just to wear snug camis (the kind that are supposed to slim your tummy) and see if that helps. I could tell a difference after 2 treatments and my range of motion has improved 25 degrees after three weeks. I made sure she sent her eval to the BS, RO, MO, and PCP. It could have just started, but given how long I've had the bra issue I don't think so. I think everyone should meet with a PT or OT trained in LE prior to treatment or at least immediately following. Doctors do not know LE, sadly.
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After four months of doom and gloom surrounding mom's diagnosis, then surgery and then tons of tests and appointments, at last a little ray of sun - mom's test results and scans came back clear. She'll start chemo next week - still scary but at least now we have more hope for her. What a difference a day makes! We'll take the good where we can and hopefully it'll help us all get through this.
I hope all of you get some good news in the days to come too.
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Husker- When my PT saw my LE and when I told her what my RO told me all along, she was mad and sent him a little letter. She too doesn't understand why they don't see LE.... I spent November with my PT, 3 times a week for LE massages (she showed me the massages method too) and wrapping. I had to stay wrapped between appointments (48 hours) and THAT wasn't fun! The wrapping seemed to work for my arm but not for my hand. In the night, my hand used to swell like crazy when wrapped. And in the end of the 3 "intensive wrapping" weeks, my hand ended up bigger then when I started the whole wrapping thing. So I stopped. Now it just massages, sleeve/glove. Be sure to wear a compression bra too if you fly because LE does flare-up in that aera when flying, and it's no fun. 3 weeks ago I took a plane to Florida and with all my compression stuff, I did fine.
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Me, too, Husker - the pain I am having does not seem normal - (what's normal - I know most of us no longer know!!) I know what you mean about RO's being asses....I need a break from all the med profs. My BS is a lovely person, but she does not always present the entire picture. She leaves it up to my MO to give me the negative info about my path report and he does not even bother reading it. Thank goodness for google and this forum! My GYN is the only one who gives me the whole story. She believes in facing the worst head-on and being proactive.
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Titan- my onc unhooks my bra, does his exam and then hooks it back- very weird feeling!!
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OMG - I would not like the hooking and unhooking done by someone else. That is weird!!!
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I have to admit having your dr undress and redress you is pretty strange and I might feel a bit uncomfortable. I haven't really had an exam with my onc yet, today will be the first official one. I'll have to see what thier procedure is. During chemo when I questioned some scar tissue, his female assistant had me lift my shirt and unhook my bra so she could feel around he wasn't in the room yet and hubby was.
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TryingToSaveMom - Great news!
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Yeah - my onc unhooks my bra. He always asks if I need help fastening it. I always say no even though it is really hard to do and I'm "happy" as long as I get one hook done. As I'm lying there with bra and shirt round my neck he also unzips my jeans and checks the lymph nodes in the groin area then zips me back up.
I find it all weird and don't understand what they are thinking. It's easier for us not to undress? I would rather gown up in private than fumble with my clothes like a teenager in front of the onc.
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I completely agree! Give me a gown anyday.
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,,,maybe no gowns as they are trying to save on laundry costs....lol
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