Chemo May 2011
Comments
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It's been a sad 2 days after good news. Got out of the hospital yesterday and feel like crap, well maybe that's cause the chemo is doing it's job I tell my self. My laptop got a worm/virus while is in the hospital and I don't know how to fix it, so I am using my desktop.
I went for my neulasta shot today and said I wanted a copy of my ct report. All along I have been told I am stage 3, but on the report it said a couple of nodes that were positive are considered stage 4, but seems to be a grey area, so my docs still consider me stage 3. I am so upset, and then my husband tells me that is why he told the docs not to tell me, which upset me even more. I am so pissed off at my docs, and more so my husband, because he told them to withhold the truth from ,me. Can they legally do that? I want all the info, even if it upsets me, how can I fight if I don;t know exactly what I am fighting.This knowledge would have made a diffference how I filled ot social security disability and everything. Now what do I tell people, after I told them the good news of shrinkage? Problem is that I have 2 positive nodes that sit under the mammary nodes in a fatty area and they are the ones that are stage 4. They are shrinking with treatment, and I really don't know what stage I am. My doc said he is doing the curative path what ever that means, if there even is such thing.I feel so sick and I don't think it is from the chemo. Sorry for pouring my heart out and I think I am just going to keep telling everybody I am stage 3 cause I don't want to freak anybody out. But in my mind I know the fight ahead. I m so mad at my husband, he thinks crying is not being positive and if you aren't positive you can't beat this. I tell him I know many positive people that didn't beat this and that is not a fair statement. This disease can get you whether you are positve or not.I made an appointment for my therapist and I am talking to her about this and then making him come with me the next time to see if she can knock some sense into him.
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Neecee, I actually really like my wig, the cut and color, I think when this nightmare is over I may actually grow my hair into its style. I have this irrational fear that I'm going to wear my wig to work for the first day, drive the hour to get there and not be able to get out of the car! I hate, hate, hate crying in front of my guys and generally I don't, there have been times due to sickness and death in the family that they've seen me cry. The week the I found out I had BC I was a disaster and then when I found out I had to have chemo I was worse. Now I have this fear of crying uncontrollably while they stand there not knowing what to do. I am trying to do everything I can to prevent a reoccurrance. I've changed the way I eat drastically, I've pretty much cut out processed sugar, white breads, white potatoes. I bought a book called The Anti-Cancer Diet, a new way of life, it's written by a doctor who had brain cancer twice. I'm overweight and surprisingly with just changing the way I eat and not exercising I've lost 25 lbs since I was diagnosed. I'm really hoping the new diet and exercise (when I can) helps.
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bkj66 - hugs to you! I am so sorry for your news. It seems unethical to me for your doctor to not be forthcoming with you about your diagnosis. I definitely encourage you to speak with your therapist about this, so you can work through the emotional issues. You do not need to be carrying resentment and anger around in addition to dealing with your treatments!
mccrimmon - I totally understand the "don't cry" thing. I consider crying in front of others a sign of weakness. I hate doing it. Big girls don't cry. I get it, I really do. I also understand that our emotions are what they are. They are neither good nor bad, despite whatever anyone (including ourselves) has told us all our lives. BC has a lot of emotions attached to it. I don't think anyone on this board hasn't had a crying spree when diagnosed, or when presented with the need for chemotherapy. I for one came out of surgery convinced I would not need chemo, because we got the whole tumor with clean margins, and I did not have any node involvement. When my oncologist told me that I had a 45% chance of reocurrence without chemo, it really rocked my world. So I say all that to say this - so what if you cry the first day you wear your wig? You feel what you feel. And I am betting that you will rise to the occasion, and you will be stronger than you imagine right now that you can be. Unless you work with total jerks, I also think you will find that your co-workers will also rise to the occasion and be kind, gentle, and supportive. If not, report back, and we will all give you our virtual support and hugs!
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Bkj - Can your doctor lie to you? Couldn't he lose his license? I'm so sorry that this is happening to you. You know that your treatments are shrinking the cancer and your only on your third, so it's possible that by the time your finished and have surgery you'll be NED, and if it's a grey area you could still be stage 3, I can't imagine a dr lying like that knowing he could face severe penalties.
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Hi BJK66- I had a nasty computer virus that made me tear my hair out until I came across a tip- with windows 7 I found that I could boot up in safe mode and restore to a previous update which was pre virus- do if you know when you got the bug you can restore your system to a previous system save pre dating the virus. It worked for me with a nasty bug that disabled my anti virus and saved me having to wipe the system. worth a try.
Hope everyone is having a SE free weekend. This week seems to be an emotional one for many of us - there are so many strong women here that I take strength from in each of your stories!
take whatever helping hands offer and do something nice for yourself each day!! (((hugs))) -
Bkj66- not getting the truth from your doctor sucks. I am glad that you Will be seeing your therapist to ramp up the communication with your husband. You don't need this right now--- when someone takes our ability to address things based on reality ( by being dishonest ) -- we can't problem solve realistically.
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Blondelawyer,
Love the pink wig, that is my moto have fun with it,what else can we do... I really though it would be different losing my hair but you know what, it really did not bother me at all, I am embracing my boldness. Still have eyelashes and eyebrows yaaaaa, I will start with fake eyelashes when/if they fall off because for me it is the eyelashes if I do not have eyelashes then I will not be happy, kinda of weird hunnn... Anyway glad everyone is doing ok and for those of you who are having lots of SE, I will be thinking of you and trying to ward off the SE deamon's for you.
Hope everyone has a good weekend.
Lots of hugs and love
Pam
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I had a funny exp with my wig today. I was working drive thru at the bank and a woman told me she really liked my hair. After she drove off I made the comment, well you can have the same hair I ordered it off the internet. lol
It was funny and my coworkers and I had a good laugh.
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BKJ - I'm sorry to hear your news. Just doesn't seem right.
Pam - I lost my eyelashes and brows twice! First after about the 3rd A/C, then they started to come back and lost them again after the 3rd weekly Taxol. It's harder than losing my hair. Hope yours are spared.
Read a good quote today - "No matter how bad things are at any one moment, no moment lasts. Good or bad, time moves on because it has to. And so do you!" Hang in there for another good day if this one isn't!
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Bjk66, if the positive nodes are under your mammary nodes, isn't that considered "locally advanced" (I.e. Stage III). I thought only distant metastasis is considered Stage IV. Can anyone weigh in?
At any rate, keeping any of this from you is WRONG. I am sure DH had good intentions; he didn't want you to be depressed or upset, which is understandable. But, we don't need any more surprises at a time like this. still so happy about your great shrinkage news. Awesome!! -
bkj66 - legally and ETHICALLY, no they cannot keep information from you. because you are in a "sound mind", YOU are the one who is ultimately making your healthcare decisions. how are you supposed to make the tough decisions when you don't even know fully what you're dealing with? as a nurse, i see some pretty sticky situations arise when family members know more about the patient than what the actual patient knows. you may want to look information up on the AMA website. or read/skim through HIPAA law.
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my husband said that the surgeon said some could consider it stage 4 but he considers it stage 3, then husband told doctor to please say it is stage 3 for my benefit. I got my ct report and right on it, it said those nodes shrinking show that it was probably cancer which is conducive to stage 4. But my onc does say locally advanced and never has given me an exact stage even when I ask him, just the surgeon did, and I think he truly sees it as stage 3. It was just so upsetting seeing stage 4 on the paper work. I probably blew it a bit out of prorportion, but I want them to ell me everything! I deserve to know. I might be a bit confused about what everyone is telling me also, so sorry if my story is different, I am just so confused! Patriotic, I think you are right, one of the nodes is connected to the im node, just protrudes under it and the other one is next to that one. But I need to focus that they are shrinking at a great rate! As upset as I am about stage 4, I am going with the surgeons comment, stage 3, as long as it doesnt' travel any further. Still planning a chat with hubby.....
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Dont worry. I am stage IV. I have mets in my bone, liver and lung. Or atleast I think, because I had hot spots in them, they only biopsy the lung.
I figure that it will go into remission then in about 10 years it will come back and by then they will have new treatment and it might be one shot.
Things are always changing.
This time last year I was doing a speech intro for my dad (for speech class, dad not really there) about how he had 3 different types of cancer from 76' to 2007 last being Breast Cancer and how he was too stubborn to let it take over.
Then He got number 4 it gave him phnomomia and that got him in December. Then in Feb this started for me.
It is a hurry up and wait life, BUT it is LIFE!!
Dont let the stage depress, scare or worry you. Yes you may cry at times but face it, before any of this happened I bet you cried some times, I know I did.
Sometimes a good cry is good.
Take care, Live happy.
Candice
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Bkj66: I am SO sorry! I would be so angry as well. I think that you need to discuss this with both your doctor and your husband. It is a breach of trust and you need to be able to trust the doctor to give you all of the information. Ugh, and your husband! I am so sorry! I absolutely hate to be lied to, so that is a trigger for me.
I am hoping that everything calms down for you and you can move on from this. Hugs!!!
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My friend shaved my head today and some hair started to come out. I think that I could have gotten away with it for awhile longer because I have super thick hair, but I just didn't want to see it falling out in my hands. It feels a bit like taking some control, but at the same time it is pretty depressing. My "real" wig will be here early next week and I am also going to the wig bank on Monday to see if they have anything decent, so I'll feel a bit better then. I probably should have gotten my "real" wigs in hand before shaving, but it was a "pull the bandaid" type of thing for me.
The side effects have been more manageable for me with this first round of AC than they were with Taxol...not sure why. Today as probably my worse day with some nausea, diarrhea, and fatigue, but I honestly expected it to be much worse.
A professional photographer that I have admired for some time offered to do some free photos for me next weekend, so I am trying to get excited about that and prepared. I am going to try to go to Portland for a couple of days and just relax before the shoot. I am feeling so cooped up! I really wish I could take a vacation, but with all of this I have no idea when that will even be remotely possible. My SIL and niece might come out in August and we might go down to the Oregon coast for a couple of days--but it really depends on my chemo schedule and how I feel.
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I thought I would branch into more solid food and had sone pistachio nuts. It was like my stomach just stopped. And then came the nausea and the vomiting. The ness are finally working. I have had more vomiting this round than I haven a kong tine. I hope I can eat tomorrow.
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ksmatthews - love the wig story!
MamaV - great quote. I'm gonna keep that one.
Cyborg - sorry to hear about the nausea and vomiting. I learned from round one to eat what my body craved. When I eat what I think I should eat, I end up getting nauseous. When I eat what I crave, even if it isn't what I "should" eat, my stomach does not give me trouble. Hope you feel better tomorrow.
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DebRox,
Sorry you are so down today, that sucks. How is your body feeling from the shot..
I am here for you, lots of hugs
Pam
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Cyborg, Sorry you are not feeling well. Hopefully you will find something that sounds good and stays down.
blondlawyer- I know what you mean by taking control by shaving your head. On Sunday (last week) I was running my fingers threw my hair and pulled out several stands. I decided that I wanted it BUZZED and NOW! My sister came over with clippers and a chocolate shake. (I am craving chocolate shakes) and buzzed my hair.
Yesterday, I spent at my moms and my hubby (and some friends) rearranged the house so it was wheel chair mostly accessable (old house some doors are not wide enough). They also brought my King size bed and frame down stairs. As I cant do stairs because of my leg. So My loving husband cleared out 3/4 of his den to bring the bed down stairs for me!!! His den, for me!!
I do think I slept better next to him.
Lots of hugs everyone, hope SE dont get to you to much.
Candice
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Thank you Candice and everyone, I do think my husband had my best interest in mind, but I hope he learned from this to never withold info from me ever again. I love my doctors and that made it even more upsetting, so I will talk to them both about this and tell them I need all information, good or bad and that I may be upset sometimes, but I can handle it. I do think they had me as stage 3, as the other nodes are so close to the im nodes, and still local and on the same side, but ct scan said stage 4.
My brother fixed my computer, it was some nasty spyware trying to get me to spend money to fix the spyware problem, norton security had a patch for it and it took care of it thank goodness.
Enough of me now. I hope everyone is feeling better and se's are going away, seems like it has been a rough week for all. Blondelawyer- last time I went through this I found ac much easier to tolerate than taxol, I am not looking forward to taxol after my last 2 ac this time!
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a/c chemo number 2 down glad it is this time was harder to bounce back . OH mee 2 more of these to go and i will be so glad to get past them. My foot hurts for some reason ?? Do any of u experience this ? I was fine and just started hurting. In the arch of my foot. Hope the weekend was good for each of u i do come here to read hardley have the energy to type . But today is better and i am wishing all a great day!
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Hi everyone: seems like it has been an incredibly rough week for everyone!
Bkj66: sorry to hear what you are going through. I'm sure your docs and hb are only thinking of you and your emotional well being. The docs feel you are stage 3, but a scan says stage 4, but it is a computer program, without thinking ability. Trust your doctors. I know you said you do. You sound like such a strong person, I admire you.
Justme1: my Achilles tendon and plantar fascia hurt while walking. Not sure why, but they both do. It does go away with a little stretching.
38yo: love your attitude. I'm happy you were able to adjust your sleeping arrangements. It is so important to get as much sleep possible to help the body heal. I think about you daily.
Cyborg: you're having a difficult time this round. Hope you are able to eat today. I agree with neecee, eat what you crave. I found that a few days after chemo I crave salt. Probably low on sodium. I read somewhere it is important to have sodium, potassium and electrolytes to prevent dehydration. I hope you can at least drink some gatorade or pedialite to fend off dehydration.
Mamav: love the quote. I'm going to keep that one.
Plils: I haven't had any pain from the shot. Did the claritan and aleve thing to prevent pain. So far so good. How are you doing after second tx?
Does anyone suffer extreme depression, apathy and hopelessness from the steroids? I do not get the steroid buzz at all, i feel very down when taking them. The first time not as bad as the second time. This last tx, I cried for 3 days straight. I still cry at the drop of a hat. The first 2 days were worst where I feel like the doctors are trying to kill me with all the drugs. I feel like I want to give up and would rather die than continue. I know this sounds extreme, but this is how they make me feel. I researched this a little and this is a rare se, and it is a good thing I'm not on anti depressants as they would exacerbate the feelings.
I'm worried about taking steroids a third time, the feeling seem to be getting worse with each treatment. I must take this up with my onc. In addition, my face has broken out in acne, all over. Again steroid induced. I'd almost say I'm allergic to steroids.
Other than that, chemo SEs not bad. -
Debrox ---- I cried my head off with the first steroid tx. I feel down after the steroids. Just make sure to get therapy or help or call someone who can show up if you get to the point. Of suidiality.
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Cyborg: the steroids make me feel down while on them. Not a crash after. They seem to linger in my body 5-7 days. I checked drugs.com for side effects and depression is a rare se from taking steroids.
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Blonde lawyer, I am surprised your SE's seem more manageable with the AC. Interesting. Great. Do you notice a difference already in the BC? Was really worried for you when you said your BC was not responding to the Taxol.
Happy Father's Day to everyone. This is the first without mine. It's tough.
Another week down. Another week closer to completing the chemo nightmare. -
Tomorrow is the chair for me. The SE's this past week were the worst yet. So lethargic, so drained, so depressed. Diarrhea or constipation... no medium ground.
This is the 1st week I am actually dreading chemo.
I was such a couch potato last week. I hated it. And tonight I've had to dump some close friends who were just toxic for me since I've been Dx'd. They were draining me dry with their drama so I had to cut them loose, which doesn't help the depression. I expect in a couple of weeks I will feel better from having gotten rid of them, but right now I vacillate between wanting a kind of revenge for sucking me dry and a grief that I had to let them go.
ANyway, thanks for the place to dump and vent.
Twisted steel that feels like twisted aluminum foil right now.
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Twisted steel I had to make sure that there were no toxic people during this process in my life. Good for you for havin gthe strength because it's not easy to do. I am also having a hard time regulating between constipation and diarrhea
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Hi Everyone,
I have been away from the computer this past several days. I have found a new place and moved in last week.
I have read all the msgs I have missed and so much had happened since I last logged in. I heard a lot suffering from SEs, different wig stories, and problems with doctors. I hope today is a better day for everyone.
I flew from San Francisco to Akron, OH yesterday for my fiance's graduation this week (thus, my #4 A/C is moved to next Monday instead of today). I had to wear an armsleeve and glove to prevent lymphedema.
Have a good Monday to all!
Laureen
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Hello Beautiful ladies,
I just wanted to say that I love you all and if you only knew how much this board had helped me and is helping me get throught this nasty disease.
I don't write a lot on there but, I do read all and take it all in.
Thanks you ladies you guys are all gems in my book and together we will all beat this nasty disease.
Many hugs to all
Love Pam
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Twisted steel, I agree. It's really tough to have to "dump" the toxic people. I have only had to dump one but am equally annoyed with a few family members. Does that count? LOL. I think the bottom line is that none of us need the stress. I try not to get really angry about anything because I definitely think stress can make us sick. And half of the things that used to bother me, just don't. Funny how the word "cancer" can change and actually improve your attitude about this stuff.
Laureen, I am so happy you found a new place.
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