Is there a July 2011 group?

Elizabeth: I did get more sleep last night and talked to the Onc nurse today just to clarifly all the prescriptions I am to take. She said for me to try the Lorazepam (which I got on Friday cause I felt anxious) for sleep if that doesn't complete ok to use Tylenol PM again, If need to do that call tomorrow and they will get me a sleeping aid. Well here I am at 12:51am and I am wide awake. But happy to report the other SE seem to be at ease.

 Rabbit: sending you good vibes to push out those SE.  

rabbit - so sorry you are having all of these SE's!  My heart really goes out to you.

painting, I can't remember exactly the time it took to get my MRI results.  I think I had it late in the week and got the results early the next week???  So, maybe 3-4 working days.

Ok, so 10 days away is a lot to catch up on.  Sorry to hear about SE's and chemo related BullS**t! Congrats to those who have finished.  I thought of you all on my road trip and wished you could have been with.  I can not tell you how wonderful it was to be away where no one knew what was going on in my life.  I was still strong, and happy, maybe not as beautiful on the outside but more so on the inside.  All of those people I know from my travels had no idea and those I chose to tell were more supportive than even best friends.  Strange the things you learn in life.  I lifted, and moved furniture, I drove 2 trucks across the state of Texas, drank a margarita, ate barbque, steak and bacon.  drank a beer. laughed with my BFF so hard a pee'd my pants.  Met the nicest trucker on the road to was responsible for me laughing so hard. Went swimming in Arizona, visited with family.  And most of all THANKED EVERY DAY FOR BEING ALIVE!

hugs to you all, start rads on Monday and will keep in touch

KHS- Oncotype is a special test. They usually send a sample of the tumor to that lab. It's very expensive and some insurance will decline it being covered. Most docs won't do this on someone who has already had tumor marks supporting HER positive like me but my doc wanted it to confirm how estrogen positive I am. The stats talk about the genetics of the tumor not to be confused with your DNA. Each tumor can come back with different results on the same person. Often docs order it to determine if someone needs chemo or just radiation etc. You can google it to get more details but it gives more of a quantitative result that some of the traditional tumor markers for ER PR and HER. I believe they tell you "others like you had a X% chance of recurrence" .... Specific to node negative people. They only order it if adds value to the treatment plan.

Paintingmywaythru, best of luck for the MRI. 

J-Bug,  my onco won't let me do another MRI until a few weeks before my surgery, once I'm done with all my chemo, and you get it so often, not fair, I want to know how much my tumor has shrunk!

dexxy, sounds like you had an awesome time! Best of luck with the rads Monday.

Hope everyone is feeling well, I am! I will post tomorrow what my onco says about the hand and foot syndrome, thrush etc. gotta love all the SEs I'm getting lately, a clot, woooohoooo

love you all

rabbit: The way my MRI's have gone is after every two treatments. With 4 A/C and 4 Taxol, the first MRI of the A/C and then the first one of the Taxol each showed no change. But, the onco waited for the results of the MRI before continuing because he said that if he saw growth in the tumor, he would have changed treatments. So, as glad as I was to check on results so many times, two out of four of the MRI's showed no change - which is also hard to handle.

I also have to spend the night taking Prednisone to prevent a reaction to the contrast media ahead of time. This forces me into being up all night from the energy level and keeping up with all the doses at the right hours of the night. So this MRI thing is not all its cracked up to be - for me anyway.

I wanted to post my update separately...I have experienced more neuropathy this time around. My fingers and toes feel like they are numb and possibly asleep. I didn't have it like this with Taxol #1 or 2. For those who are finished, did this get worse as Taxol went along?

On a more personal note, I have been having a really hard time lately with knowing that my dream of children won't be realized for at least another 2+ years and maybe not at all. My neighbor delivered a boy yesterday and my baby (that I lost) should have been 6 months old right now. I've been angry, hurt,  jealous , and bitter. Today my husband and I went to the beach (I have to start up at work again tomorrow so the rest of the week is out) because it was a nice day and the beach has always been a soothing place for us. We were sitting in our beach chairs, eating our lunch, and a seagull came up to us. He appeared young and gentle and unafraid of us and he came really close, closer to me than any bird has ever been. He spent over an hour standing by us and looking at us and even chased other seagulls away in what appeared to be him trying to protect us. I told my husband that I thought if reincarnation was possible, then this must be our son coming back to visit.  He agreed and we decided not to throw the football around as planned but instead to stare back at this beautiful creature that seemed to know us.  It has been the most uplifting experience I've had since my diagnosis. I just hope it will be enough to get me through the next few years without kids.

kristien - what a beautiful story about the seagull.  I can picture it in my mind.  I'm sorry you are going through such a difficult time.  I wish so much we all lived close to each other and could come over to give you a real hug. 

Allenan -- I also have a problem with gas -- I feel like I need to have a cork in my bottom. LOL  I have IBS so my stomach is always upset -- usually pretty bad the first few days after chemo. Immodium Multi Symptom (in short supply, what's up with that?) usually helps, but then that dries out my eyes. The punctal plugs the opthalmologist put in made my eyes into Niagara Falls (1 in 250 get this problem, lucky me!) so I had them flushed out yesterday. Back to eye drops all day long again.

Painting: Wilmingon was devastated, from what I've heard from friends. It makes me sad because I have so many good memories of being up there with my family (they all ski at Mt. Snow, I don't ski. But I shop...) and I loved the area.  So sad to see what's happened with the flooding.  Good luck with your MRI. Keep us posted.

Dexxy: Your trip sounds fabulous! How nice to escape from all the BC stuff for a while and just go out and LIVE!  Good luck with rads! I'll probably start those some time after Thanksgiving.

JBug: I wish you some good resting time.  It's hard to come by but so great when we can get it.

Misswimm: Speaking of resting time, it's a real struggle for me to stay awake at work.  I'm good until around 11 a.m. and then i start to crash big time.  My eyes just close.  I could use some toothpicks to prop them open a la Clockwork Orange.  Ergo my fake eyeballs.  I think I'm going to start taking naps in my car in the middle of the day so I can make it through the afternoon.  Yesterday I visited school sites instead of coming in to the office and  I was able to go home early, and take a  two hour nap before going to the opthalmologist for the  plug removal.  I had enough energy after that to go grocery shopping, I have 14 coming for Rosh Hashanah tomorrow night.  All family, so I'll have a lot of help, but still, it requires some prep and planning.  

KK11:  I'm still not sleeping great -- I fall asleep without a problem and can get three house before I start the waking up routine, then it's every  hour or so for the rest of the night.  Between the aches and the constant need to pee (all the water from the daytime has to go somewhere I guess) I'm bouncing up and out of bed all night long.  Some nights I just can't  get back to sleep, so I turn on the light, startling the cat who likes to sleep on my bed and who looks at me like "WTF? The dog isn't even up yet, what are you doing?"  I don't want to take any more pills, so I'm just doing the best I can. And falling asleep at work, LOL. Fortunately, my boss and my colleagues are very understanding and supportive.  As long as I don't snore or fall off my chair... 

I also still have more palpitations than usual, which I'm attributing to a combination of the Herceptin, Abraxane and lack of sleep.  I just try to ignore it the best I can since it seems to come and go.

I've been taking B6 twice a day for the neuropathy and it does seem to help -- my feet are better and my hands are almost unaffected.  Could be mind over matter, but I don't care, as long as it feels better.

I'm so looking forward to the long weekend -- even with company coming tomorrow.  I figure everyone else will help with the setting out of plates and the cleanup, and my contribution is providing the space and a few dishes that I will cook.   My family usually contributes to the meal so all the cooking never falls on my.  Glad about that.  We will be squeezed into half a house. Looks like I won't get construction finished until around Christmas. All the contractors have been to the house, measured, assessed and are submitting their estimates to my adjuster, who will have to fight the good fight to get me the FEMA flood insurance money that I need to redo everything.  I'm cautiously optimistic that I can, like they did in the  Six Million Dollar Man, build it better than it was before.  We shall see. In the meantime, I have my 20-somethings sacked out in my living room on a sofa bed with their bags of stuff all over.  going to have to move that stuff around tonight to make room for company. LOL

Hope everyone has a good day, with few or no SEs.

I feel like I have been away from you all forever, although I have continued to read your posts regularly. I'm on the upswing - feeling better all the time. I just have to be careful not to push too hard. I went to a yoga class again last week. Much better than the time I cried through the whole second half of class! It was much more low key. At one point, we did this arm swing thing and when we stopped she said to take a moment to feel the energy in your body - and I did. I realized I had not been paying enough attention to how I feel. I'd just been going along as if everything was fine. Not that it is bad - just need to conserve energy and rest when I need to rest. It's hard to be done and yet not be DONE.

Finally got my exchange surgery scheduled. I guess I'm a bit of a control freak - can't stand not knowing what the plan is. Plus, I had family members waiting to make their own plans and I hate feeling responsible for delaying others. Anyway, it is scheduled for 10/28 and I'm both thrilled to be getting closer to being done with that and nervous about going through it, too. Makes me think about the time leading up to my mastectomy. Makes me cry even now to think of it - was such a difficult time. I was in shock and so upset. Not in shock anymore and not nearly as upset. Just kind of stirred up I suppose.

kk11 - Loved your story about the seagull. Sounds like such a peaceful time for you.

rabbit - so sorry about the GI issues/chest pain. Sounds miserable. About the hand and foot pain, I had some pain around my heels the last couple of treatments. Still not sure what that was about. Felt like very dry skin that was about to split, so I used Aquaphor and wore socks over it to help absorption.

dexxy - What a great trip! Love hearing about you getting to have some "normal" time again.

J-bug and misswim - Hope you both get some rest and energy again soon.

ellenquilt - thank you for your ongoing entertainment. I loved the picture with the eyeballs on the glasses. I looked at it before I read your post and thought it was a little off, but could not quite tell why :-)

I'm so sorry to hear about the aftermath of the flooding in VT. Nashville had a terrible flood in 2010, and I remember how devastating that was for so many people.

For those of you dealing with Taxotere SEs (and maybe similar for Taxol), I also had some of the same things. Weird shooting pains, although not terrible for me. I did not get any fingernail pain until after the last treatment. My theory is that it is a delayed reaction from earlier treatments - just takes a while for the nail to grow out enough to show up. My liver enzymes were elevated the last two times - the last time I had avoided taking any tylenol or drinking and it still went up. So I'm thinking it is the chemo. Just hope that goes back down on its own soon.

Hot flashes - ugh. I allow myself to take one Ambien a week. My doctors seem to be worried about me taking too much and I'm afraid they won't prescribe it for me again, so I'm rationing ;-). I get the best sleep on those nights, though. Otherwise, I sleep until 3 am (like clockwork) then am awake on and off the rest of the night with the hot flashes. It sucks. Although they prescribed Effexor for me, I'm nervous about taking it and want to talk to her more about it first. She said something about it making people sick when they go off of it and that scared me. I have a follow-up appt tomorrow so will see what I can find out. 

Expecting to start Tamoxifen in the next few days - after the follow-up with my onc tomorrow. So . . . onward!

Finally, before I turn this post into a book - a happy story. My boyfriend took me out last week - said he would arrange something but did not say what. We drove to an area I was not familiar with and ended up at a marina. We went to a huge boat that turned out to be owned by his brother and brother's partner. I had not met them before, so that was a surprise! We went on a beautiful sunset cruise on the river with champagne and snacks - to celebrate my being done with chemo. Everyone on the boat hugged and congratulated me. It was so thoughtful. He does the sweetest things sometimes :-)

Thinking of you all and wishing you good luck on chemo and MRIs and radiation - oh my!

Kristien- Sadly I did not go to the book festival. I didn't feel on top of the world and the weather was potentially rainy and cool. Even more sadly, it was a pretty nice day. ah well. On the book note, I think it would be cool if you read/re-read Jonathon Livingston Seagull. It will remind you of your day at the beach for many years to come. If you're at all interested in feel good books like that I also recommend I Heard the Owl Call My Name. It's old and might be difficult to find, but totlly worth it.

 As far as SEs from Taxol, I think maybe mine are reduced since I'm not doing dose dense. I'm doing weekly. I have some fatigue that I could probably work through if I pushed myself. I think I'm being too lazy. A superviser position that I have been groomed for has opened up and I hope I can prove that I have the energy to do it. Otherwise I'll be stuck again for a few years and I won't have that. 

RABBIT...With experiencing painful mouthsores I was put on diflucan for 7 days at the start of each chemo. I still got mouth ulcers on my tongue. Used a paste formt he periodontist that helped the most but it was hell and I am sorry you are suffering. I did all the right stuff too. I also have some red things on my palms and wondered about it but thing it might be psoriasis. This is weird. I don't have it on my feet.

KK11....glad you felt close to your son....life gives us little gifts to hold on to. Such a lovely story.

Starting rads tomorrow at the ungodly hour of 7:45 as no times at 8:30 or 8:45. I am NOT a morning person!!!

Does anyone have a problem with dripping/running nose and stuffiness?

I think it is the result of the TC chemo but wonder....thanks all.

Susan

Hi Paintingmywaythru---Hope now that you're done with chemo that the mouth sores start to subside. I start radiation next week. I saw the radiologist yesterday and got fitted for my little body cradle as I lie on the table in a bathing beauty pose with my arm crooked above my head. Got tatooed (ow!) in four places so that I'm in the correct position each time I get zapped. They took a CT scan so they could see where all my vital organs are and don't zap them at all or too much. Next Wednesday they'll take some xrays and then I start 30 daily sessions of radiation. Doctor said I would feel about the same tiredness I do now and also prescribed a steroid cream to rub on the zapped area each night. He also recommended changing to a non aluminum BO killer because you can't wear regular deodorant or any creams to radiation. Non aluminum is probably the better way to go anyway for alot of reasons.

Misswim---Totally understand your feelings of finishing chemo. As crappy as it is, it felt like a safety net. Something you could imagine was killing all those errant little cancer cells. I'm trying not to revisit the statistics and numbers. My goal to getting back to normal or the new normal is to add one more activity, chore, exercise each day. Just push myself the tiniest little bit. Melt downs are good. Crying is therapeutic. Tears get rid of those toxins. If anybody has the right to be down and weepy it's us.

Frances recommended rosemary oil and jojoba oil applied to the scalp and says it really promotes healthy hair regrowth. Smells good too. When I washed and rinsed my scalp last night I could still see some little hairs that came out. Can't believe I'm still losing hair!

wow, my interview is online:

 http://ireport.cnn.com/docs/DOC-679495

pretty cool  

Rabbit, very impressed with your interview! You are a star! 

I'm having some difficulty keeping up -- poor focus I think -- and I'm also making dinner for 14 tonight.  Fortunately, my kids have been helpful in cleaning up (cleaning service came early this morning, thank goodness!) and setting up and my youngest is in the kitchen prepping food now so I can rest.  

Rabbit: You have been having a horrible run with SEs, I hope something lets up for you so you can feel better.

My two SE's fo the Week are....tada....exhaustion (not new, but still hanging on) and diarrhea.  Lovely that.  Plus there is a shortage of Immodium Multi Symptom so I was lucky to find some at BJs where I had to go to get a folding table for tonight since my other folding table was a flood casualty and needs disinfecting.  Not in the cards for today. Got to talk to the onc about the stomach problems.  They add to the exhaustion. I am trying to stay well hydrated though. Lots of water, tea and soup.  I think I'm going to start scheduling a one hour nap every day at work in my car (on my calendar and everything) since my boss emailed me today and was worried about how tired I was all week and wanted to know what she could do.  Naptime would help the most.  AFter a decent nap I'm good for a few more hours of whatever.

Which brings me to the subject of Melatonin -- I'd like to know what everyone thinks is the right (or almost right) dosage.  I'm only taking a tiny amount 3 mg and it doesn't help that much.  I see that missswim is taking 20 mg. I woudl love to get  or 6 hours of sleep.  I'm at 3 right now and that isn't working out so terribly well.  I'm going to bring it up with the onc tomorrow for discussion. I think I need more. Either that or the cartoon guy with the hammer who can hit me over the head until I see stars and go unconscious for a while.  

I'm rambling.  Definite case of chemo fog brain here.  Happy New Year to those who celebrate and a great weekend to everyone.  Tomorrow is Day 10 of 13 in my weekly Spa schedule.   Getting close to a schedule shift and closer to radiation. I wonder if it's better to get it done before work early in the morning, or at the end of the day.  Suggestions?