August 2010...anyone starting chemo besides me?!
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Lady - how are you doing today?
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They had a computer glitch at my onc office and it turns out I need 1 more herceptin than I thought so I had to reschedule my port removal for the end of Aug. For some reason I actually feel kindof glad about it, something about the early Aug date was bothering me, don't know why though. So I will have a total of 18 herceptin treatments. I also have another ECHO at the end of this week, that will be number 4. Of all the things we go through the ECHO is a breeze! I am missing my vacation I gotta say - I am just back into the deep end of work. Other than that it's hot hot hot here, probably 108 right now. HOpe everyone is doing A-OK.
Oh yes, and today is 1 year since I got the phone call about cancer and also 1 entire year of no alcohol. That's pretty amazing since I do love beer - almost as much as coffee!
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Hi All, I'm a little better today, my legs don't hurt as much. This is what they did last chemo, hurt for about 5 days and then got better; it was/is just more intense this time. I appreciate all of your support. If I need some body to come down and whup some doctor ass, I'll let you know!
Omaz: I didn't want to even think about my one year anniversary date (last month), but you can't help but think about it. Hope you are doing ok.
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lady I'm so glad you're feeling better. At the next treatment tell them you need a prescription for percocet to take home so you don't have to go through that again. (if you don't see your onc on treatment days call ahead and ask them to have a script waitng for you).
Carolyn
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Lady: glad you are feeling better! Sweet dreams
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Lady: Soooo glad to hear you are feeling better. Make sure to tell the doctor how bad the pain got so you can get something before you leave your next treatment. You only have three more, right? Almost there, hang in!!
Omaz: Wishing you peace on the anniversary of you diagnosis. Hopefully the busy work day kept you from thinking too much about it. Congrats on making it through a year of hell....without taking a drink!!! YAYYY!!
Debbi
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Lady - that's insane! They should give you whatever you want as far as relief for side effects!
Lizzy - alkaline is very important, and it's fairly difficult to do unfortunately. I test my saliva and I'm still always acidic even though I've cut all acid foods (ahem..except coffee) and eat lots of alkaline (lemons are actually VERY alkaline, despite the acid -weird, huh?) Ionic foot baths also help create an alkaline state and eating tons of greens does too. I don't know what else to do - yesterday I had a broccoli sprout shake with total greens powder at breakfast, along with eggs, for lunch, it was a salad, dinner was a salad - I did have a dunkin/ donuts iced latte - no sugar added (We went to Great Adventure, so we packed our lunch and dinner and hit DD on the way home) and then for a snack that night I had popcorn and a kale shake from the garden. I really dont 'know HOW I can incorporate any more greens into my diet without sprouting bunny ears and a tail - but I'm still in an acid type state. It is frustrating.
Anyhow, yeah, we had a blast yesterday at Six Flags! Totally awesome - it was fun to go on the coasters (even though I don't do the SUPER big ones) but I got really sick on an indoor in the dark coaster, Skull Mountain.....Fortunately, I had thought to stash a bottle of Ativan from chemo in my pocket before we entered the park - didnt' want it in my backpack since I Thought they might confiscate it as "drugs", and I remembered as the roller coaster car pulled back into the station that I still had them in my cargo shorts pockets! I popped one in my mouth before I even got off the ride -
Oh my goodness I was SO SICK! Thank God for the ativan and the benadryl I brought. I felt like it was chemo all over again - we went to see the dolphin show and I just sat there and sweated feeling like I was going to pass out or throw up. Fortunately in about an hour the ativan and benadryl kicked in and I was able to ride a couple more rides without a problem - but hence the D&D latte on the way home -with those drugs in my system I didn't want to drive home sleepy!
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Good day, warriors-
I hope you all are having good times these days! Finally, at long last, summer is here! For us Northeastern girls, this is indeed a remarkable event that gathers all of our attention and fills us with joy and great expectations for some "no snow" fun!
Lady: soo glad you are feeling better! Don't forget, I was a milimeter away from going to law school so you can rent my chops any time!
Ginger: how is it going? I hope you are doing well and have gotten some answers on the MRSA situation with your dh. What a travesty for him to a) have such a dx and b) for your health to be somewhat compromised during this time as well. I hope you are doing ok.
BTW, that mother in Norwalk has been framed in some drug busts. It is pretty bad what they are making her look like. I think she is being totally set up to save face for the municipality and to make her look like the nefarious one, not them.
Sptmm: how are things going? Did you win mega millions and are being purposely circumspect?!
Calamtykel: I am going to Six Flags NE in a few days but it is no Great Adventure!!! LOL that you were packing ativan at Six Flags!!!!! Good that you thought of that.
I am going to post the info on alkalinity later today. I keep starting and getting sidetracked. You were actually the first person to bring to my attention the importance of alkaline state. I feel this bc business is so multi-faceted, it is imperative everyone help each other to keep track of the details so I thank you for that.
Rachel: How are you doing? Did you go on vaca? Something tells me you are gone this week....to Disney! Hope you are having fun with your rather stylish hair non-cut....just growing in fashion fab!!!!!
Texas: is away as well...I miss you, woman! I hope you found a suitable suit! I was joking with Tex that we, for the first time in 27 years, are concerned with stuffing our bathing suits!!!
Omaz: did you enjoy your vaca, yachting around the Mediterranean? You see, your lack of details makes me fill in the blanks!
Adey: I kind of wish I was not infected and could have gotten rads. I am so happy you got rads. I hope you are doing well.
JSW: clean your house out of any good stuff ie: high end carpet, high-end appliances etc.. and rent it. Tell the tenant you are trying to sell and just rent it. There is no reason in this world to leave an asset in the antithesis of fermentation! If you can't sell it, make sure it is growing in value for you while it sits. If I were you, I would comfortably even give a 1 year lease and back off the sale idea totally. I firmly believe this RE market is in the crapper and it is not coming out soon. I think if you end up in AL for a few years and rent it, you will be able to sell more easily then. Also, for instance, if the mortgage is 1200 and you rent for 1650, you give 100 to a local "property management" co to answer maintenance calls etc.. and you are still coming out with a few bucks each month and don't have to worried about going from AL to FL. It makes life easy.
I am growing more suspicious of this "mass" in my chest especially after I got my notes from my last visit to the onc where he declares "there is no mass" in that breast. Therein lies the caveat which will send me seeking other opinions.
I hope you all have a lovely day.
PS-I can't believe this Casey Anthony trial.
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Lizzy - are you saying the onc couldn't find it or feel it.
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We are heading on vaca next week---kids have one more week of school here. Looking forward to it.
Lady--Glad to hear you are feeling a little better---soon enough you will be done! Sending hugs.
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lizzy I'm sorry you're worried again. Has the mass changed? I would definitely get a second opinion. It just seems like with the infection in your implant and treatment delays and the trouble you had trying to get to see your onc for a while that it might be worth it to have another pair of eyes on you just for peace of mind.
Carolyn
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Omaz: they can definitely find it and feel it. It has got to be like about 3/4 the size of a golf ball. It is just I don't understand how a doctor can *touch* a mass quite close to where the cancer was originally and tell me, based on touch, it is scar tissue. I am firmly in red flagville and my ex from NJ who went through a lot of medical stuff these past few years told me the most important thing is to be your own advocate. I need someone to test this or to scan it or something
Ckptry: I agree. They are all getting me nervous now. There is something perfectly antithetical about finding a mass right near where the bc was to begin with and automatically declare it scar tissue. There are alarms going off for me especially b/c everyone with my same dx went through rads and I could not b/c of this infection. I just find it very disconcerting to touch someone and declare a mass to be scar tissue. You worked at MSK and I am sure you have seen this type of situation several times. I mean what are they going to say if I find out their "touch" analysis was incorrect and that this is cancer? Then what? Sorry is not going to bring my life back or the time I lost. I am getting a 3rd opinion and it is going to be Boston, NY or I might go see my brother and go in TX for the 3rd. Something is bothering me here and it is not going away. I am losing sleep and I can't shake this. You all know by now it is very unlike me to worry and I have taken this whole thing lightly but this is bothering me.
I think if I was an oncologist dealing with a person with a Stage IIb bc and I found a mass, I think I would have a lot of trouble arbitrarily ruling it "scar tissue" without investigating it or having it tested. It seems cavalier to not want to check into it further just to be safe.
Another thing that concerns me is this entire wound area has been getting air at it for quite a while during changing of the wound packing etc... and doesn't cancer *love* air? Isn't that what we all, us common, non-medical folk, believe helps it grow? I have never met someone who had a biopsy and who was convinced their tumors growing tremendously after the biopsy was an act of God and not related to it getting air at it and being messed with/woken up!!! Mine went from less than 1cm to 2.5 in a matter of 6 weeks from the mammo/biopsy gig and the bmx. How the hell did that crap increase 150% in size without some sort of provocation?
Yes, in long, I am concerned. I am very concerned that they don't know what causes it, what fires it up, what brings it back and based on their enormous lack of knowledge about this disease, I can't help but think they are opprobriously remunerated for conjecture and furthermore should be investigating everything with bc patients based on their proven lack of knowledge about this disease.
Something is bothering me these days, Carolyn, and it is not making me feel comfortable.
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Lizzy - You are absolutely right. Go, get it checked for your own peace of mind. Do you have an appt already scheduled??0
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Lizzy: I think you should definitely get a second, or third, opinion as the case may be. Hopefully it is scar tissue, but since it is so close to the original lump I think it warrants more than a tactile evaluation. Can you have an MRI with the open wound, or a CT scan? That would give them more information. I am sorry you are so worried, get that appointment fast, you don't need all the anxiety. As for Mega Millions, as usual I bought the tickets and never checked them. Believe me, you will be the first one I notify if I win....we got a gym to build...LOL!
Cal: Did you ride the new stand up coaster? I want to take the kids to Great Adventure this summer and would love to ride that one!
Have a great night everyone!!
Debbi
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Lizzy - you need to get this taken care of. For your mental health. I have been there! When I found that lump at my collarbone in January, I lost years off my life. I went to the oncologlist who told me not to worry since she couldn't find it. Well, I DID worry and she sent me for the ultrasound - they saw it.....when I went to the breast surgeon (eternity between that ultrasound and b/s) she looked at me and said "THAT little thing??? I was alarmed when I heard about this - I thought you were gonna walk in and have a golf ball sticking out of your neck!" I told her "That little thing" is a solid moveable lump and we need to find out what it is. She said "It's a lymph node - we all have hardened nodes from time to time - it's not outside the realm of a normal size - it's even too tiny to biopsy." I told her too bad - take it out. Don't care if I have to have general antesthesia and do it in the hospital--which they did. The nerves were affected in my neck and and face for a little while but it was absolutely worth it to KNOW it was benign. Because right now I don't trust any doctors - anymore at all.
Yeah< I get the need to know -- totally! Demand a biopsy -- they should be able to do that much -it shouldn't be hard to do, right??
k
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I had my first annual mammogram today. I am clear. good to go and okay. At Seattle Cancer Care Alliance the doctor looks at the pictures right then, no waiting days or weeks to know. I am blessed.
I have a bladder infection, finally got it diagnosed today. I had waitied because eveyone in the family had something going on and I felt I could wait a while longer. I had an amazingly difficult time producing enough pee for a test and a culture today. I drank three 16 ounce bottles of water. The lab got enough of a cultrue going to show I did have bacteria and so the Doctor didnt wait to see the specifics but got me going today o n medicine. I am taking an antibiotic and hope I get a quick result.
My medicine is the same as my husbands just fewer doses. He is feeling a little better today. I think the Septra/Bactrim/generic has given him major runny tummy. His face is looking close to normal again.
So I am doing the happy dance, clean mammograms! I have a light and grateful heart.
Lizzy go get that second or third opinion. Can they do a biopsy on the mass? Does one test show scar tiissue more difinitvely than others? You don't need this worry.
Hugs GInger
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Congrats Ginger!
Lizzie....get another opinion. A friend of mine was having a prob with her breast post cancer and her doc said it was an infection...but it didn't get better. She has a vacation house in south Carolina and went for vacation. Got wondering more about her breast...called the cancer centre there, made appointment, had biopsy and got results all in a couple of days...that is unheard of in Canada....it wasn't cancer but a hematoma that had built up, long story short, she couldn't rest so the second opinion was key!0 -
Lady Glad you are feeling better, and I second (or third or fourth!) the reccomendation to talk to your doc before your next chemo and see if you can get that percocet prescription!
Lizzy You are so good about telling all of us to advocate for ourselves, now you need to take your own advice! It may well just be scar tissue in there (given that you have had surgery at least twice and have an open wound there now I would think scar tissue is the most likely culprit) but you need to have peace of mind about that. Your doc may have other reasons for believing it is scar tissue that weren't put in the notes or said to you but still you have the right to ask more questions and of course to go get another opinion. If I were in your shoes I think I would be at least demanding a scan and then possibly a biopsy after that depending on how the scan looked.
Omaz Glad you made it through your one year anniversary and good luck on your ECHO! I get MUGAs and they really are a piece of cake compared to everything else! I had my 4th one a couple of weeks ago and it came back at 71%, which as I understand it is pretty good and is right on track with where it has been on all the previous ones. I will be having Herceptin until October since I had to take a break from it during the 3 months I was on AC.
Ginger Congrats on your clean mammo! That is awesome that you get the results right then. I had to wait for mine but the place where my sister went (she lives in Phoenix) also gave the results right away. So much better that way! Also glad to hear your DH is feeling better!
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Hey ladies - I'm on my way to the breast surgeon in about an hour to get this fluid filled thing checked out.
I'm frankly terrified. Today the assistant called me to review the results with me - she didn't know i was coming in - I guess they just sent the results right to the breast surgeon. All she said was if it isn't bothering you she will probably want to ultrasound it again in 6 months. I told her I was coming in today - she she said 'OH - maybe she'll ultrasound it today then or even aspirate it". Freakin' hate that word.
praying it doesn't hurt. but just what I need - more breast injury??? Breasts are SO TOTALLY over rated - I wish I had em both lopped off last July. When I get the courage up I want this one off too - just need to be "ready" for the whole surgery thing again.
Anyhow, now I'm kinda scared - I mean what if it's abnormal or something bad...................
I don't want any surprises!
She still hasnt' seen the films - I have to try to get those on the way in and hoping they will be ready - I called yesterday about them. I guess she just got the actual "report".k
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Good day warriors-
I truly feel like a warrior today after I have been on the phone all day discussing these current matters. I am pissed about so many things right now all related to these doctors and all this cancer crap! I have had it!
Sptmm: you speak the truth, woman. A tactile investigation is completely uncalled for. Especially when I am getting stomach sick after I eat, my lips are perpetually chapped (taken together it is a sign of a gastrointestinal problem), all my joints hurt and both acchilles are hurting. Add to that the alternating numbness in both hands on the thumb, index and middle fingers and I don't sound like the picture of health. You know what bothers me the most about the joint pain? That is the way I felt when I was dxd.
It seems to me like they collect their money, study us and then wash their hands. Well, I made a lot of phone calls today and none of which I am sure they are going to be happy about but I don't give a shit. This is my health, not theirs.
About the coasters, please go and ride the stand up coaster!!!!! I love coasters! I wanted to see if I was going to feel well enough to ride at Six Flags NE today but alas our plans were rained out. I did not even want to take a chance as those tornadoes that decimated parts of Springfield and surrounding areas are not far from Six Flags so we cancelled.
Calamtykel: I am so worried about you now. That is frightening that they forwarded your results right to the surgeon. I hope everything is ok. They probably forwarded just to allow your surgeon just to be sure and that was the right thing to do. At least you are not dealing with "magic fingers central!" Kel-please let us know when you get home how things went.
Kel also the one thing (the onc team) told me was because it "moved" was a good sign?! I don't feel that it moves but rather the skin around it moves.
I am going for 3rd and 4th opinions if need be. I am getting to the point where I don't trust any of these doctors.
Ginger: at the risk of repeating myself, all they did was "touch" the lump and declare it scar tissue. Even a friend who is a dr in NYC said that sounds ludicrous and cavalier.
I am so glad your mammo was clear! Good for you! I am very happy for you to get some good, calming news.
Sorry about your DH. I don't know how stuff such as MRSA is running so rampant. I had worries about it when I was in the hospital for this infection. No good.
Rachel: thanks on the advice. I am going to get more opinions out of this area and see where I go from here. I am also really worried about feeling stomach sick after I eat. Never in my life have I felt this way. As far as I am concerned there are the chemo doctors and the cutters and that is it for doctors in our cancer genre. It sucks because when you have other stuff going on, there is no support. We are required to tote around a 3 ring binder with all our medical history in it from doctor to doctor. I am glad your friend went to get a 2nd when she was on vacation. Good for her!
JSW: thanks for the telling me to take my own advice! Good advice! I am not too happy right now with any of these doctors.
Well, girls, I hope you are having nice days for yourselves. It was a good day in CT to be on the phone all day!
I will keep you all posted and thanks so much for your support.
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Lizzy - Would anyone at the survivorship program be able to help you out?0
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Lizzy: I think I read somewhere that it's not the air that makes the cancer grow; but that when they do surgery, sometimes they cut the cancer without realizing it, thus spreading it even further. Sort of a damned if you do, damned if you don't. You have to have surgery; but the surgery can end up making it worse!
I spent the entire morning at the heart center having tests. I had an echo cardiogram, then a stress test, then pictures taken of my heart. I saw a new cardiologist Monday, just to get established with one here, and he wanted to see where I'm at heart-wise. I guess it's good he ordered the test. I have a stent from 6 years ago and haven't had any heart tests since then because I haven't had any problems. It will be reassuring to know all is ok, IF it's ok, which I expect it to be.
Hope everyone is having a good evening. Cal, hope you got some answers today.
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Hi all,
Uggh. had to get a cortisone shot yesterday for right hip pain/burstitis that just kept getting worse. Started PT last week but it wasn't helping the hip pain. Sexy. Bring on the support hose and excess facial hair, between the creaky joints and the sahara down below feel like that's just around the corner. Dh had to take off from work today b/c I was up half the night crying from the pain, guess the shot stimulated something. It's feeling better today but I'm limping and it's the kids second day of summer vac so I couldn't have managed them alone. I feel like a burden to dh since this whole bc thing. He deserves better than this. Sorry for the downer post.
Carolyn
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((((HUGS))))) Carolyn! I hope you feel better soon!0
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Carolyn....sending hugs. Hope you feel better soon. I sometimes think that my dh has gone through so much in the last year also....but they love us....we would do the same! Take care and rest.
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Good day warriors-
I am really starting to believe we are epitomizing our new title, warriors! Geesh...we are all having quite a time of it. I feel like I am falling apart. BTW, sorry to drop all my "medical" problems in one post yesterday! I really felt bad. I usually don't share so much but I am getting very aggravated.
I think someone here touched upon this before but I truly believe there should be an oncologic GP in the cancer circuit. A sort of catch-all doc that we see when we are having post-bc and post-chemo problems. There needs to be another doctor in the mix. I think it was Rachel who was pondering which doc to call when she was having a post-tx problem. I totally agree with her and everyone else who has pointed out that inadequacy in the oncologic world. Their favorite is to try to say "your hip hurt/you were bleeding out of your ass/you had a full beard/your joints hurt/you were numb/you were sick to your stomach" all before chemo and CHEMO has nothing to do with these problems. BULLSHIT! As if I have to tell you all, I am just waking up to some of the crap I have been through and I am not happy.
Ckptry: >>>>Started PT last week but it wasn't helping the hip pain. Sexy. Bring on the support hose and excess facial hair, between the creaky joints and the sahara down below feel like that's just around the corner.<<<< LMAO!!! I am sure you were not trying to be funny but I could not help having a good laugh!!!!! I am so sorry but I am with you! We all feel the same way. My sister said the other day she was not sure how I did it and handled it all so well without a husband. I did it by keeping good friends and happy, upbeat people around me who were not looking for sex and other things I could not provide/did not feel up to providing!! I reminded her that I THANK GOD I did not have a husband with my total lack of interest in "that," the "sahara" as you aptly put it, the lack of boobs and the total disinterest with dealing with anyone else's drama while I fully embrace my own. I even dumped the guy I was seeing because I guess he thought I was still "in the mood" while I was going through= NO, get to stepping!!! As for marriage, I understand it is "til death do you part" but I would feel bad if I had a husband right now with my inability to "entertain" him. I mean, I would try and make an effort, even if he did not expect it but, at the same time, I would lament the passing of my desire and longing to be there for him! In fact, sorry to say, I might give him a hall pass!!! I just don't believe in matrimonial jailing!
I just feel that all the women with children and husbands while going through this bc dx and txs are truly super heroes. I don't know how you all do it/did it/continue to do it and do it so well. Women are the most selfless creatures ever created.
Lady: I am so glad you got all your heart tests done and your docs are watching out for you. I am so very happy. Please let us know your results. I am looking forward to hearing nothing but good news and celebrating with you when you are finally done with this second batch of chemo! Long live and prosper the very strong and resilient Ladyinbama!As for surgery and cancer, you are correct in that it is very much a double-edged sword. The entire event is like taking a trip to Spooksville USA!
Omaz: as for survivorship clinic, they are very good. I will see them in a month. I will have gotten all my answers by then. Sadly, I also found out that gastrointestinal pain and chapped lips combined are a sign of a gastrointestinal problem. My lips are all puffed up, red and cracked. I am putting vitamin e (breaking open the capsules and using the guts!) and vaseline on my lips. They have been like this for over 2 months.
How are you feeling these days? Have you gone back to the trainer? Did you ever check out Zumba? I want to know what is going on with you!
Calamtykel: can you please post and let us know what happened yesterday?? Please, please, please. I am very worried about you and your silence is concerning me. I hope you are just busy and have not had a chance to post.
As for me, I am getting a sonogram of my stomach next week and a full blood panel. I am also getting this lump checked out by another outfit. Do we really have to work so hard, with great health insurance, to get the answers and help that we need? Opprobrious remuneration for next to nothing comes to mind again. And you know who I think the true heroes are in the whole mix besides my GP?! The nurses. They are the ones who have been the most kind, empathetic and understanding that god gave them 2 ears and 1 mouth for a reason.
God help us!!!!!!!! The battle for proper medical attention wages on.
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thanks guys ! Lizzy I was trying to be a little funny, you have to keep a sense of humor or you'll go crazy. I'm missing one big toenail and I joke with dh that that losing tha toenail is the straw that broke the camel's back. (I tell him I'm fed up from my post cancer hair to my post cancer toe:-)
rachel you're right, we would do the same . thanks for reminding me:-)
kel I missed the post about your breast. I can't belive you might need another biopsy. I hope everything is ok!
ginger yay on the clear mammo!
Carolyn
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Lizzie--Yep, was me who is confused of who to call....never had so many doctors in my life...Hopefully I can get rid of a few over the next few years
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Lizzy- My lips did that! And I also had a very sore throat. I went to the Dr to check for strep cuz I didn't want to chance getting worse for my DD's graduation. They said it was a virus. I used some natural cold sore stuff on the lips (Walgreens). I had never had them react like this and thought maybe I was getting one. It subsided after a week or two. Weird. Maybe it was a TAC after effect!? If you still have the L-Glutamine it is good for the digestive track. (c: Hugs. Later.
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Hi my B.C. pals, I keep up with this site daily but don't post much anymore. Well this last Tue. was my one year anniversary since that lovely phone call came on my vacation that the needle biopsy was positive for cancer.Wow, what a year it's been. You all know the drill, surgery, chemo, and radiation and all the side affects that go along with it. Yesterday I had my six month mammogram, can't say it felt good but was not as painful as I thought it would be. I like the fact that they give you the results almost immediately and that you're good to go. I still have the hip pain but not near as bad as before. I had accupuncture and massage and have been taking fat soluble vit. B-1 to repair sciatic nerve cells so it seems that one or all those things is working. I hope this next year is a time that we can all continue to heal and that this bond that we have created with each other never ends, that's been a huge comfort to me and I'm sure all of you.
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