Calling all TNs

O.K. Went to my fabulous onc yesterday before my 5th taxol. She did an exam claimed she could no longer feel my tumor. I explained she was in the wrong area. She said,"Oh! Where would you feel for it" I showed her and she said "Ahh! Now I feel it, it is smaller than it was, I think the Taxol   is working" I told her I could feel just a slight difference and she again told me I exam myself to much. If she can't even remember where my tumor is how can she determine size change by touch? I asked her again about the original diagnosis and she said in May my tumor was around 5 cm (Do they add the numbers up or what?) and classified as grade 3 stage 3. I don't get it. The ultasound I had at SIRA has on record prior to AC Lymph size  3.5 X 2.5 X 3.2  and tumor 2.5 X 1.2 X 3.1    after AC before starting Taxol Lymph 2.6 X 1.7 X2.2 and Tumor 2.1 X 1.0 X 2.3, she also said that the last ultra sound showed I forget the word she used but explained it meant active cancer cells and she hopes the Taxol will actually kill the cancer. I pray it does too! This woman is supposedly the best Onc in my area. My so called long distance boyfriend who was here almost the whole time I was on AC at least flying here for every treatment and staying after now only comes like once a month. He has had no desire for me since I was diagnosed. I guess the cancer is a turnoff for him he doesn't even want to kiss me, it's like he thinks I'm poison because of the chemo, he even asked the onc if my mouth sores that I could possibly get were contagious. He won't talk about it. I know it sounds strange but in all of this depression I crave some loving I guess just to even feel wanted would be nice. We've been together for 4 years and would spend every other week together he'd fly here or fly me to NY to see him. I should just write him off I wish I was strong enough to go through all of this on my own. I apologize if I am talking to personal I feel like I'm just floundering. So called friends have disappeared, I guess I have given the impression that I'm fine and doing well, and thats boring for them. I'm so glad for all of you so I can be honest with my feelings. I'm trying to think positive I've been reading the book "The Secret" and I guess I brought all of this on myself. Boo Hoo! Must be all of the steroids and only 3 hours of sleep. I'm typically not a drama queen at all but I'm a sobbing mess right now. Thanks for the opportunity to be able to cry a little. I'll try and post again when I am more upbeat. I'm going outside and meditate to "The Great Sunshine Buddha" I hope everyone has a great day. 

Lynn and Luah - Great news, so happy for you both 

Meece - Wonderful to have such great docs.

JennC - Wow! So sorry about your neuropathy. When did you first start getting it. I hope it goes away quickly. Is it really necessary to complete the Taxol if SE's are so bad. So scary for you. 

I'm b a c k!  Hope this post won't be to long and boring but since Sunday it has been a zoo.  I was scheduled for my port on Wednesday the 15th with a Echo to follow.  On Sunday morning, I found the knot in my left breast opposite the side she did the lumpectomy on.  I called Monday and Dr. was in surgery all day.  Said they'd talk to her if she checked in and she didn't so they called Tuesday morning when she was in the office and said I could see her that day at 12:45. 

So, it was scramble and get Hubby home from work to take me.  When he called his supervisor and told him what was up, his super said, "What are you doing here, get going!!!!".  Dr. Mammolito said she thought it was scar tissue from cauterizing the edges of the area that she took the lump and tissue out but to be safe we were doing an Ultra Sound.  Had that immediately and the Radiation Dr came in, took my hand and said..... Juanita, it's nothing.  He showed me on the pictures what it was and it is scar tissue and a small seroma and the reason it dimples underneath is because that being swollen causes the underneath to kind of dimple and pull in.  Whew!   He was so great and held my hand and squeezed it.  His name was Dr. Cross.  Always rely on The Cross I say!

So, I asked if there was any way they could check with Cardio/Vascular to do the Echo that afternoon instead of after my port surgery the next day.  Lo and behold they said since I was in the hospital and could come right over they would do it.  We were going that day anyway and staying all night since my port placement was at 6:30 the next morning on Wednesday and we have a 2 hour drive up there.  So, blessed news on the new mass as being nothing but swelling and seroma/scar tissue and we got the Echo done too and it was 100% ok for the heart too.  So, we went to Applebees as I hadn't eaten since 5:30 a.m. before all this roller coaster had started.  We had the best steaks I've ever tasted.  My hospital has an Inn right in the hospital (an older building they have remodeled the rooms into a small hotel like facility) free to surgical patients and their families.  We stayed there again.  The port placement went fine but they did do it under light general anesthesia, Dr.'s preference.  They left it accessed so yesterday when I had my 1st chemo all they had to do was flush it and hook me up.  No stick the first time and they used my recent blood work for the day before for the surgery so didn't have to do the blood draw either.  Yeah!! 

So, 1st chemo yesterday, AC.  First they gave me Aloxi and Decadron and then Emend last all through the Port.  Then Adriamycin IV/port push, 2 big syringes of that and then 1/2 hour of cytoxan drip.  During the 2 chemo drugs, I had another bag of something clear that mixes with the AC for dispersal I guess.  Before I started the chemo drugs she brought me a 10 oz. cup of ice chips and told me to start chewing/swishing that around and we'd do it throughout and 25 minutes after the chemo infusion.  So far, no mouth sores.  Chemo nurse said it makes a world of difference to do the ice chips 5 minutes before and during treatment and after.  I ate 3 cups of those ice chips!  I'm also using Biotene toothpaste and mouthwash.  They had me get Propel fitness/vitamin water and said it would rebuild my electrolytes.  This is good because I hate Gatorade!  I was also prescribed Emla cream that I will put on 1 hour before each treatment on the port area and cover it with Saran Wrap as that will numb it before they stick me as I will have to have blood work an hour before each treatment now.

Fatigue hit me within 2 hours after the treatment, like a wrecking ball.  I had to go back 2 hours later and get the Neulasta shot because they are not in their office in my town the next day so I had to have the Neulasta same day.  Last night I was ramped up.  Fatigued but could not unwind and mid evening just a little queasy stomach but no real sickness.  So far today just mild queasy but no appetite (which she said the Decadron would increase my appetite, NOT!) I had to take an Emend capsule this morning and Decadron tab 1 hour after breakfast and again one an hour after lunch.  Do that again tomorrow and then I'm done with oral Emend and Decadron until next treatment on the 30th.  I also got sent home with Zofran as needed and Ativan/Lorazepam for nerves to calm and relax me and had to take one at bedtime last night but it didn't help.  I didn't sleep worth a hoot and was up and in my recliner because laying flat in bed caused reflux up into my throat and I had to get in a reclining position so that would stop.  I'm going to ask if they maybe have me on to much Decadron.  Seems counter productive to me to give me Decadron to up my appetite and my energy but then give me Lorazepam to relax/rest me????  I've not slowed down today and feel like I'm flying although I'm feeling fatigue.

So, that's all from the trenches here.  1 down, 3 to go on the AC.  So far, so good.  Not sick but fatigued.  I get my wig and my head shaved Monday in the Look Good...Feel Better class sponsored by the ACS at my local hospital.  Cancer and chemo do not get to decide when I lose my hair, I will do that myself, one thing I can control about all this. 

Good luck to all you other new chemo gals and the ones already going.  WE CAN DO THIS.  Oh, for all us TN's,  the radiologists at my hospital are also highly trained intervention radiologists and Dr. Cross told me not to fret over the TN status because he said the fact that my nodes were negative, that reset the balance in a big way on the TN status.  He said if you are node negative and TN, the balance shifts a back in your favor.  My Oncologist told me the same thing.  WE CAN DO THIS TN's!!! 

Juanita

Stay strong LJ     Perhaps he's just trying to deal with it all in his own way. If he truly loves you for who you are, he'll bounce back.  (((((HUGS)))))  

I ordered sopies of my complete chart/record from my onc. yesterday.  The file is about two and a half inches thick.  It will be interesting to see what I get.  I wouldn't mind if they jsut put it in pdf format and sent it on a disc.  I have three other medical files from other drs. on my desk right now.

JenC : Have you asked your doctor about taking glutamine to help aliviate the neuropathy symptoms? It worked for me ! I had no symptoms at all. Check it out.....

WOW is this board busy!! Gone for a couple of days not feeling well at all and have 4 pages to read!! ;-)

LJ - if he leaves then you know it was never meant to be - I know that's not what you want to hear and hopefully he is just dealing with it in his own way right now and needs his space. Tell him you love him and see what he does from there. I hope you have others in your area to show you that support and love you deserve. Join a support group if need be anything to help you out right now because it should be all about you right now!! ((HUGS)) 

It was so good to hear all of the wonderful news taking place on here!! Congrats to all and have a SE FREE and wonderful weekend.

Kelli

We'll celebrate with you, Tiffany.

Juanita- I'm glad all is good for you now. If you have signifigant bone pain from the neulesta shot ask your doc about Zantac and Claritan 1/2 hour before shot . It really helped me i didn't need the pain pills. I know we are all different with SE's.I was also taking Zantac for heartburn. I hope all goes well for you.

jennc- Man, so sorry you have the neuropathy so bad. If it started after the third one would Taxotere have made a difference? I am also taking the L-Glutimine. Someone else recommended Vetamin B-6 and12. I bought the B-Complex but was told I shouldn't take it because of the addition of Vit. C in it. Someone else told me I should up my C intake. Ugh! What to do. I just hope you get your nerve back soon. Pun! I just got my 5th all I've noticed is occasionally I feel like someone is sticking a needle in my toes I also feel like there is something brushing against my left ankle. Could be my whacky brain which is totally beyond whacked at this point. So sorry about your husband. We as women, I think in general are so compassionate and caring. What happened to "do onto other as you want to be treated" ha!  or something like that. I understand your anger and I'm so sorry you feel it. I hope he comes around. 

Paldingmom- Thanks but I think that HHfHeidi has it right. He's on his way to bail. He's doing everything he can to be coldhearted and other things hoping I'll say "Adios. I guess I don't fit his nitch anymore. Anyone that knows me considers me to be a confident, strong and self reliant woman and I haven't been that lately. Time to get back to the person I was before I was diagnosed. I've never really been a needy person and like MBJ I've too have kind of been a gypsy as far as making new friends easy. I think this has all been a test.  WE WILL ALL BE STRONG! Kad22- You are right what is mean't to be ??? Funny I went to the local support group three times now and no one else has been there. I had some great talks with the counselor though. 

I should mention that my daughter and son are fabulous. I raised two caring souls and I am grateful to have them in my life. I feel limited as far as what I want to share with them because I don't want them to worry. My son's dad passed away 8 years ago and I know he really worries about loosing his mom too.

I think it's time for a vacation. how fun to just pretend like none of this is happening.

TiffanyF4- Congratulations. Cheers to you! I love hearing this. I'm so happy for you. Yeahhhh!! 

Laurajane:  I am sorry about your boyfriend.  I hope other people will come into your life to help, if he can't.  I am also going thru neo-adjuvent chemo and it is difficult always wondering about how much the tumor is shrinking.  I have had a MRI, mammogram, and ultrasound recently and they each showed something a little different.  I am seeing my surgeon tomorrow morning so we will see what she says.

Jwatrlily:  Great that you  got good news from your radiologist.  I also use that cream on my port at least at hour before.  It works good for me, makes the stick a lot less painful.

Riley702:  Congrats on getting those drains out.  Hope you continue to do well.  They are telling me that if I get a MX, I will also do rads afterwards also. 

TiffanyF4:  Thanks for sharing and congrats to you!

MBJ:  That's sad to hear about your college friend.  I think it must be difficult for men with BC, they don't even get screened for it, do they?  Hope you are doing well,

Wow... no more alien speak after my post!

heidi~ I am a world class worrier so I'm not the person to ask.  HOWEVER, I've heard that the taxol SE's can show up later or change over time.

Swanny,

I had last chemo treatment August 13th (5 weeks ago), and just this week didn't feel physically and emotionally drained.   You're taking chemo until September 30th?   I needed the 4 weeks between chemo and September 13th start of radiation.   You'll bounce back after chemo.

MBJ- Congratulations on your cancerversary of survival. I thank-you for sharing such a personal situation. I think it is wonderful that both you and your husband are working on things. It sounds like your partnership is special I am so happy for you to have someone like that in your life. I'm so sorry about the loss of your friend in college. You are right. All of this has made me ,(I think?, when I am not being my narcissistic self, which is what someone told me recently) a much more compassionate person. I wonder if we all feel that way. 

Lynn18- I hope your appt. with your surgeon went well.

Hhfheidi- Did you or are you taking supplements. I'm curious to know if they are after effects. I'm sorry it must be really scary for you. P.S. I kind of liked the alien post it made me smile every time I saw it, I visualized a montage of foul language expressing how you and many of us feel about this TNBC.

Swanny- Thanks! I almost always feel good after a really good cry, it is usually difficult for me to really let the tears roll, which is why it felt good the other day. Maybe it is good for you too! Here's hoping you have a great time at your party.

Teka-  I'm so glad you are feeling better and had a good week.

Happy week-end everyone.  I'm going to the Lotus World Music Festival and plan on dancing my arse off. 

Hi ladies, been away for a couple of days and so much to catch up on!  Hugs to all those who are struggling through treatments or dealing with strange symptoms or loss of support from those we expect to be there.  It's a long tunnel, but light at the end....

Just wanted to say how useful a little meltdown can be now and then with the docs.  I got word that my "annual" follow-up mammogram couldn't be scheduled until mid-December, and the MRI would be sometime after that!  I tried not to get stressed out - just left a heartfelt voicemail with my onc's nurse saying how frustrated I was because I had requested back in July that scan requisitions be put in process but was told I had to wait for my (postponed) onc appointment in September.  Who knows why.  Then I played the Trip Neg card, and said how concerned I was, as trip neg has a high risk of recurrence in first 3 years, and shouldn't I be followed more closely?   Finally, the sympathy card:  "I am doing everything I can to stay healthy, and I'm upset that the annual scans I'm supposed to have aren't happening on time."  Result: a phone call back within 2 hours, saying my mammo was moved up to Oct. 8 (MRI to be soon after).  Gotta be a squeaky wheel sometimes.

LJ:  I just read your post and felt like chiming in.  BF may or not be checking out, but you are not responsible for him.  Also---you didn't bring any of this on yourself (I'm not a big Secret fan).  You can tell BF what you need/want from him, then it's on him.  The "I could use some lovin" issue came up here at home, too.  I think the stress of the dx & tx & fear have got to play a role in all our close relationships.  I'm so restless at night (the melatonin didn't help), we're in separate beds for the time being.  The puppy doesn't snore!