The Beast & Me: Round Two
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Dang, NS! Sorry you are going through so much (I can soooo relate with the skin damage from rads). And prayers for healing? Consider it done...
It is pretty here, too, but my garden is still under snow, lol (that one stubborn patch that may be here til May, I fear). I turned on the Home & Garden Channel to watch other folks dig in the dirt. Helped a whole lot
Be well - and stay away from the Draino, lol... -
Ha ha Felicia, no draino yet!
This one remaining drain has decided to start draining again so I guess it is a good thing my doc made me keep it in.
I have such bruises from the last fill up... is that normal??
I look like I have been in a fight or something.
I am starting to get a little freaked out about the thought of doing chemo again... I REALLY HATE CHEMO. (as if anyone LIKES it!)
I know I am thinking too much because I have such a long wait to see the new onc. But just the idea of starting it- I wish I was in the middle of it already and was counting down the days to when I was done!
The last time I did chemo I finished in the spring which was great for me because I really am a summer person and get rejuvenated during that time...
So this time around I will be giving up a summer. But if it means getting rid of the beast I guess it is worth it.
Thank you everyone for all your cards and your pms. You have no idea how much you make me smile!!
love,g -
PS to my previous post-
I found out I had "extra nodal extension" and the BS said that was bad. I haven't been able to find any info on that- does anyone know about it or have had it??
TIA -
Found this for you. Does look like it can be managed.
http://bca.ns.ca/forum/index.cgi/noframes/read/328353 -
You know, Gina, my dear little onc tried to protect me from this. When I asked him what it meant he said the pathologists just like to sound smart (something like that). You may think he should have been upfront with me, but I think he could read my mind. I think he knew I really didn't (at that time) want to know everything. I'm a chicken. Anyway, I don't think it's good, but it can't be changed.
I think I had so much chemo because I my path after surgery. Remember I had neoadjuvant chemo. Had all the tests prior to chemo to see if it was elsewhere. So, after the chemo I had an MRI to see how much my tumor shrunk...about 1/2. But I still had those five positive nodes and the extranodal extension. He then had me do six months of Xeloda after rads. Now Arimidex. My "now" onc does not agree with the extra chemo. She said it was for mets (which I knew) and that HT would have taken care of the problem. Who knows who's right. That was my treatment and there's no going back.
Ask Deb (AlaskaDeb) about extranodal extension.
Shirley -
Yep...I had extranodal extension. I nagged all of my medical staff until I got what I feel is a straight answer....
Basically, mine was little curly-Qs of cancer fibers that extended into the fat outside of a node that kind of "ruptured". I made myself nuts about this little surprise in my pathology report...I was totally fixated on it.
My surgeon said he took out a LOT of fatty tissue and stuff from my underarm. He said it was because there was so much cancer visible in the area. He said that, ideally it would be better if the node contained the cancer, but hell I think it would be ideal if I never HAD the damn cancer to begin with!
I couldnt find any real data that said it was better or worse to have Extranodal extension. Of course, in my mind that one little node made me crazy. After I obsessed, loudly I guess, for the Umpteenth time, one of my chemo nurses asked my why I was so upset about that one little node . Why do you care now? The damn thing is gone!.
My doc removed enough tissue from under my arm that I could hide a baseball in the hole I guess he got that node and all its nasty little friends.
I never did find any hard data on what that little node meant to my prognosis. I dont think it will change any of your treatment. I had 27 of 32 nodes positive, so they gave me the max rads to 4 different fields .but they would have done that whether I had the extranodal one or not.
Try not to worry about it . I know hard to do.
Sending you gentle hugs and lots of prayers.
Deb C -
ok, this will be "sooooo not helpful" but gina, i had "all negative nodes" and "negative organ and vascular invasion" and i still turned up with bone mets less than a year out of treatment.
i was so angry at first! "wtf?, i was node negative and node positive gals are doing better than me", i said to myself!!!!!!
but then i woke up one morning, after a month or so of obsessing and remembered what you guys taught me ...... it's a g'damn "crap shoot" with this hideous disease ....... please try not to worry too much! i'm doing ok, except for my extremely strong ovaries that won't shut down no matter what they subject me to, and now that i've made peace with my new dx, i'm ready to say "f you" again to cancer and all it has to offer!!!!!!
my heart goes out to you!
xo,shel -
Thank you girls for all this info.
I still cannot believe that this cancer could have grown and spread so fast.
I DID feel pain under my arm when the docs were first examining me- I wonder if it was the nodes?
I am trying to think of it as all of it is gone and in a jar someplace... but then I worry about it being in my bloodstream or lymphatic stream.
I always used to make myself feel better after my first dx by saying "at least it didn't spread to the nodes"... can't do that anymore!
My doctor did say that even though it was so big AND spread to the nodes with the extension that Lobular is still better than my first tripneg. But the tripneg is the enemy I KNOW- this new one is a stranger to me.
(But I intend on killing it anyway!)
Tomorrow- MAYBE- MAYBE- MAYBE- this drain will come out.... I am praying!
I have been so sick all weekend though that it was the last thing on my mind.
Thanks for keeping me sane- you all are THE BEST!
Love,
g -
Gotta say again, Gina, that your outlook is amazing and can only help bring about healing and recovery! As for chemo, what will you be getting (if you already said so, sorry, I couldn't find a mention)? Maybe you won't get that sick from whatever they'll be giving you and can plan some enjoyable activities in anticipation of summer? One thing that someone suggested to me since I did chemo throughout the whole summer of '05, was to buy several birdfeeders and hang them in a window I look out of frequently. I did and it was lotsa fun checking out the different types of birds and their behaviors. If I had been really ambitious, I would have gotten a book or googled different breeds too. I still enjoy watching them though. It's a thought anyway...
Get some good rest, girl, and keep hangin' in there! -
Thanks for the lesson, Deb. My surgeon didn't take out a golf ball under my arm. I feel like I'm carrying an extra boob around. I want it taken off. Most of the time I can't tell whether it's lymphadema or the doggy ear. I hate it!
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Hi Marin, I will have to do chemo. I don't know which one yet. But it will be including Taxotere because of the nodes. I am going to try to get Abraxane since I hear the S/Es aren't as bad with that.
I love your bird feeder story! I have bird houses in the pine tree right outside my front window and it drives my cat absolutely nuts. But it is a like TV for him!
Shirley, what is a doggy ear???
Well, I don't know if they removed my brain or my breasts.
Last night I set my thumbnail on fire on the burner on the stove and didn't even feel it- I smelled it!
Then today, I saw a woman I have known for at least 6 years. She stopped in the market to say hello and the grocery boy was wheeling this big loud cart behind me so I couldn't hear her. Not only did I NOT know who she was- but I didn't hear what she was saying. When the noise stopped I heard her say, "Things are not the same, they are just not the same"--- I kept staring. She finally asked me if I was ok! I said I didn't hear what she said and then she repeated it and I realized WHO she was! My dear friend who died of BC in October lived next door to this woman... she was saying that the house is not the same without her. I think I blocked that all out or I have chemo brain and mastobrain. She is also a bc survivor so I told her I was a little "out of it" because I had a new primary and was walking around the market with drains... so she said- "Oh you are on Pain Killers- no wonder you are spacey" I laughed and said Yes! I couldn't bear to tell her I am not on anything!
Then tonight, on the same burner I burnt my thumb on last night, I put the oven mitt on. I walked out of the kitchen and my cat was meowing at the stove. Sure enough! I set the oven mitt on fire! (I think my cat must be part Dalmation!)
Anyway- I hope some of my brain cells return soon... I think I am missing out on a lot!
Love,g -
Gina, you ALWAYS manage to make me laugh.
Doggy ears? Well, I didn't know about them. I kept feeling this stuff sorta on my back right near where the breast was removed. No, my breast was not on my back! Hmmm..perhaps that's why they missed the darn cancer on the mammo..they were mammo-oing the wrown thing! Anyway, before I knew they were called "doggy ears," I was calling them "angel wings." It feels as if the ears/wings have moved more under my arm. What it is is FAT. At first I thought it was saved in case I wanted reconstruction. NOT!
You've had reconstruction so you won't have this problem. AND, you are probably skinny. I really need to make an appointment with my PS to see if he will get rid of this annoying crap. Perhaps then I would speak to him about taking off the other boob. I say I need to do a lot of things, but haven't done them. I just hate going to the doctors...ANY doctor. -
Gina...You really are hilarious and I think you may have a talent for storytelling...that grocery store scene could have been out of an SNL skit (if they spoofed chemobrain or, as you call it, mastobrain!).
What a clever cat you have. I think mine would just head for the hills. As for the bird feeders, I've found that my cats enjoy them as much as I do...we call it 'kitty-vision'! -
Gina: Oh my, you made me smile with you story in the grocery store. I am totally amazed at how strong you have been through all of this. 4 weeks psot op and grocery shopping with drains. Now that beats everything.
Fitchik: I loved your birdfeeder story. I used to feed the birds all the time. Even got to recognize their different calls.
Gina: I had my surgery and chemo all through the summer of 2005. Started June 2nd. My friend bought me a nice patio set of table and chairs with an umbrella. My husband got me a chase lounge. I got myself some good books and had my laptop. Oh and I had my flowers. I planted flowers for everything and nurtured them just about every hour!
OT! I got my evaluation today from my administrator. One year ago I thought she was the boss from well ya know, below, not up. Anyways - its the best evaluation I have ever gotten in my career.
Anyways, Gina, Im hoping your home from the PS and the drain is out! Enough is enough.
Nicki -
I don't have a bird feeder anymore. However, I do have a video that's called "Catnip." Some cats LOVE it. They sit there and actually watch it. And then sometimes tries to get whatever's on the screen...birds, rabbits...I need to have that put on DVD before it degrades.
Shirley -
Gina, My little dog sits at the sliding glass door all day looking for squirrels we say he is watching the backyard channel! My animals have been a godsend every single day of this journey. I love the Mr Fluffy stories I shared the bluebird of happiness story with DH and kids it got a big laugh. Thinking of you and your chemobrain fondly! If you ever get to San Jose you better look me up!
Cindy -
Marin, I like that "Kitty-Vision!" - do cats see in black and white??? LOL
Nicki great news about your eval!!! You go girl!!! I am taking your words to heart- I love summer and I am an avid gardener and have been so depressed that I won't be able to this summer- but you gave me hope! Of course I can garden! Thank you!!
You know when my doc told me I would need a port the first words out of my mouth were "Will I be able to mow the lawn??" he said he has NEVER had a patient ask him that or have that as their first concern!
Shirley- there is a video like that!! OMG- my cat would knock the TV over. He weighs 26 pounds! he is a Maine Coon and that is the normal size for them!
Cindy- If you like Mr. Fluffy stories there are LOTS of them- that cat is a true character! I am glad you got a laugh. And I would love to go to San Jose some day!
OK- drum roll- NO DRAINS!!!!! I have packing to keep that radiated side inplace and hopefully it will stick.
I have been having a lot of trouble on the new cancer side and my PS explained to me that after the SNB came back positive my BS did "a complete, total mastectomy" on that side- especially under the arm and along the side of my ribcage. he said that the BS scraped the muscle and there was a really big empty space there. He said what I am feeling is the scarring that is happening as it heals and that is why I have so many blood clots there. Even though it hurts, I was really glad to know that he got rid of everything- since I had 4 nodes plus the extranodal extension.
Monday is the new onc meeting... I must say I am really sweating this out. I hope I do better in chemo this time around than I did last time.
For you Fluffy fans-
This is him when he was still not quite reformed:
and this is after reform school
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LOL at your Fluffy! Here is a weird coincidence for you I had a huge cat when we were kids that we think was a Maine Coon either that or part Lynx LOL. Here is the funny part her name was FLUFFY. I will have to find a photo of her and scan it. She looked very much like your Fluffy.
My Fluffy was also an absolute pig. She would eat anything and everything. We went on vacation one time and the house sitter fed the cats all they wanted to eat. When we got home Fluffy could barely get up the stairs! Her belly was actually touching the floor and she weighed over 30 pounds! Our Vet just about laughed himself to death when he saw the cat too funny. The house sitter said that the cat always was begging for food, so he just kept feeding her.
Enough cat silliness WoooHooo on NO MORE DRAINS!!!! Wow, that must feel so good.
I wanted to tell you that I too got the total mast, scraped muscle surgery. I did not have recon, so I know that changes things, but I still, over 8 months post surgery; have 3 seromas on my cancer side. We drained them, aspirated them, did healing touch on them you name it I tried it. They are probably 80% reabsorbed, but they are still there. My doc also said it was from the radical nature of my mastectomy. I joked with him that he must have done everything but pull out the power washer from how I felt. I think having the 27 + nodes and the extra nodal crud, they really cleaned me out good. I was told to expect it to take as much as 2 years to totally get rid of the swelling in those spaces that get left behind from all the scraping. I would think that maybe the pressure from your expanders might be a good thing it may force the tissue back together better .not sure, but it sounds like a possibility.
I hope you feel better every day and that the new Onc is a dream doc. You are due for a few good breaks
Thanks for the kitty photos
Hugs
Deb C -
Deb, you should be a doctor... you have helped me so many times!! Thank you!
That is funny you had a Fluffy too! When mine was owned by that woman who abandoned ALL her animals, his name was Max. Sometimes if I say Max he looks at me like HOW DID YOU KNOW THAT NAME??
his former owner was terrible. One day she threw out all her pets and wouldn't let them back in. I found homes for the dog and the other cats but Fluffy stayed with me... he really had a hard time with the neighborhood kids and was afraid of humans for a while. Now, he is Mr. Personality!
Thanks again for that info.
So far the fluid seems to be stable and not accumulating... if it stays that way then he won't put in another drain.
I am getting VERY NERVOUS about Monday's visit to the new onc. I have to get over it but I am really obsessing here. -
I remember you saying you adopted Fluffy, but I dont think I have ever heard the whole story. It is so cool when love brings a scared animal around to being a happy, healthy animal. Give Fluffy a scritch behind the ears from me.
Of course you are stressed about Monday. The unknown is always a scary thing. I swear that waiting is cruel and unusual punishment....there should be a law that we get fast treatment, fast results.....with everything I have been through i really think waiting was worse than any treatment I have had.
I can never remember can you take anything like valium or Xanax? If you can, then I am all for better living through chemistry my friend. Sometimes just a glass of wine will help. You know all the tricks what relaxes you what absorbs you so completely that you can forget about cancer for a few minutes.
Come hang out with us. We understand..
Hugs
Deb C -
Thanks for your comforting words Deb!
Today I did something that I hoped would ease my anxieties and it did. Thanks to Julia (Jdash) i went to a new wig place that makes the wigs for you- not pre-made wigs. The man there was so nice. He lost his wife to cancer and has a mostly BC clientelle.
He is matching my color and even my widow's peak and I will be able to wear this wig in a ponytail too. He is even helping me with the insurance stuff for it.
THANK YOU JULIA!!!
At least now I know that I will have "me" ready and waiting for when my hair falls out.
Thank you everyone for everything so much.
What would I do without you!!! -
Deb,
I was just on your blog.....what a beautiful area you live in...I have a friend that moved to your city years ago and has always said how pretty it is there....
NS....Im heading to your blog now -
Ns,
Your blog is so....dang I dont know what word to use......from reading your post here I have known that you are a fighter and that you will never give up, but after reading your blog it shows that not only are you fighting for you, but for bc sisters in general....
You are a such a wonderful friend and sister to have....thank you -
First, Thanks Jule!
OK- tomorrow is my first meeting with my new onc for my new cancer....
It has been five years since I did chemo last and a lot has changed!
If any of you have thoughts on what I should bring up tomorrow please post them!
Thanks in advance!
Love,
g -
I will be thinking of you G . I wish I could be with you
to help .
love,
Carrie -
Hi G- I will be with you in spirit and waiting outside on the magic carpey to get you safely home. Have a good appt and let us know how it goes.
Hugs -
And??? Does he have a brain??? What happened????
Gentle hugs to you, sister. I hope it went well. -
I've learned lots from you and others that I was never told, so I can't help with the questions to ask.
Just wishing that all goes well today, G.
Brenda -
Things didn't go too well at the new onc. She spent the first ten minutes telling me all the places my cancer will recur to and that it was a bad prognosis.
She didn't take into account all the info on Lobular out there and was pretty good at scaring me!
But she was also trying to convince me to do Adriamycin. She vetoed any suggestion of Gemzar or Xeloda or Abraxane...
Who has had TAC?
Who has had T/C?
Can you tell me about your experiences??
I do not want to do Adriamycin because I got heart issues from my FIRST round of chemo five years ago.
Thanks - any info or opinion will be greatly appreciated!!!
Love,g -
I did 5 rounds of FAC (adriamycin, cytoxan, 5fu). You can do this. It will be hard but you will find the strength.
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