Starting Chemo April 2009

Glad to hear from you Titan, just wanted to make sure you were doing OK!  Keep hanging in there, WE CAN DO IT!  Glad you got my message.  HUGS, Dawn

Stephanie, check in when you can. How are you doing? Are you on Taxol #3 today? Good luck!

Thinking of you.

 Pam

HRF:  Congrats on this one being your last one.  Just remember no matter what the SE's are its your last~~~then you join us on the road to recovery from all of the chemo.  Drink tons of fluids and keep flushing it out.

Nadine

Helen - So thrilled for you to have your last tx today. I am having my 4th on Thurs, and then 2 more to go. I wonder why some of us get 4 and some get 6 of the TCH.

Be strong and brave and know that every SE is the last time you will have them. That's what I'm going to do on my final tx. Can't wait.

CONGRATULATIONS!!

Hi Everyone-

I feel great, which I know is short lived since my next treatment is 6/25 (which is #5, then one more to go-WHOOHOO!!).

Lena- You are not alone as you can see from the other postings, and I can also agree. It does us no good to focus on the negative, we need hope and that is what this site gives me. A place that I can vent or just know that everyone here understands what we're going through. There have been times that I have lost it (threw something at the wall, broke it and also put a hole in the wall) Did I feel better? Yea, I did for a moment then realized that now I had to fix the wall. It's funny because I'm in a place now that I am so angry or more hurt because some of the people that I thought that I could count on have really disappointed me. And there are others that have been wonderful. The one person that upsets me is my step-daughter. I thought that we had a close relationship. Two days before my 10hr. surgery, my step-daughter, her husband and my 13 yr old step granddaughter took my husband and I out to dinner. I felt invisable as I sat at the table while the conversation went from sports to current events and everything execpt me. Sounds self centered? That's what I thought after thinking about how I felt at the time. I was nervous and terrified of the up coming surgery as well as the new dx. of cancer and all my fears that I didn't know how to deal with. And everyone acted like nothing was wrong  and everything was fine. I wanted to cry or scream. Instead I just smiled and went along with the meaningless conversation. My step grand-daugther asked me to come with her to the gift shop in the restaurant. I thought that she had seen something that she wanted. Instead she was smiling and so proud of herself that she had found a rack of pins, bracletts whatever you can think of they had it devoted just for breast cancer awareness. I lost it!!! I started sobbing and I couldn't stop. I scared Erin, she thought that she had did something to upset me. I was so upset with my re-action because it upset and scared my grand-daughter. Then I got angry, but didn't say anything. How stupid of my step daughter to let a 13 yr old be set up like that. But then again no one really understands how we feel inside. Just recently, the same step- daughter, knowing that myself, her dad, and her sister and also my daughter were walking in Relay for Life to honor my fight with cancer, did not donate a cent towards the cause. She has never given any words of encouragement, she just avoids the whole issue. She did tell me she got me a t-shirt that says "fight like a girl". I want to tell her to stick the t-shirt. But then again like  putting a whole in the wall. Lashing out may feel good for the moment, but would only make things ulgy, and in the end would be more of a hassle trying to fix the relationship afterwards. So I won't say anything. I just feel sorry for her because she doesn't understand and is clueless. And feeling angry doesn't do me any good, uses up too much energy that I need now to get through this. Now that I have rambled on and on, I guess I just want to say that even though I go through times that I want to scream or am feeling very down, I need to hang on to hope and remain positive. 

I also am bald, have lost most of my eye lashes and have had reconstruction surgery, but have no nipples and have a scar from hip to hip (from the tram flap procedure). I don't want my husband to even look at my body right now. He tells me I'm beautiful to him. I feel like he's just saying that, because there is no way that feel anywhere close to beautiful or even like a woman. Hopefully after the treatments are over and our energy returns so will our self esteem and sex drive.           

aoandrews43,  After my third A/C, I bled for eleven days straight, not heavy, but constant, haven't had my period since then - I am 48 and was not even close to menopause before I started chemo -  highly ER and PR +.

Paula3558, some people just can't handle it - plain and simple - they avoid discussing it for a variety of reasons:  It is too painful for them- they don't want to have to deal with your problems, they are accustomed to you taking care of them and they don't know how to flip that around, sometimes people avoid it because they don't want to upset you by bringing it up - what they don't realize is that it is the pink elephant in the middle of the room and it needs to be acknowledged.  Probably during dinner that night they were trying to keep your mind off of your upcoming surgery by talking about anything else but your surgery.

Question:  first Taxol yesterday - my fingernails are aching like they are going to fall off- anyone else?  Thanks - Tammy

HRF:  I am not a violent person but reading your post makes me want to slap the s**t out of that nurse.  Some folks just need to find a new profession.  Also you asked a question that I have been afraid to ask my doctor...how do they know the chemo did its job...I have asked that question a million times and I would hope they would have a better answer than the one you got.  I will make sure I ask when I follow up in 3-4 more weeks and will post what my doc says.  I keep hearing percentages from my doc but I want plain English facts not percentages.  We aren't statistics we want plain answers.  So glad you got it done today.  Keeping you in my thoughts and prayers.

Nadine

Cay, my own sister stopped speaking to me right after my lumpectomy in February, shortly after she cut my hair short prior to chemo.  She was my hairstyist as well, and there was not a bit of compassion in her as she told me, as I'm bawling my head off (it was the day we decided to do chemo, I tried on wigs uncessuccessfully and she was cutting my long hair very short), "its just hair".  I left and haven't spoken to her since.  She has never called during the roughest of chemo times or after any surgeries to see how I have been doing.  I attempted to call her and text her several times and got nowhere.  My middle sister has no idea what her issues are.  It hurt, because she is the closest relative to me besides my brother in this area, and I really could have used her support.  I was ALWAYS there for her during her good and bad times, helping her with her three kids during a very rough divorce, multiple moves, etc.  When I made another attempt last week after she'd had some minor leg surgery and she actually responded, albeit with one word responses, I thanked her for answering me, telling her I missed hearing from her and it had been very rough for me.  Her response was basically, "you and I aren't the only ones in this world dealing with hard things."  and I took that as go f**k yourself.  So, I still don't know what I did except get cancer.  Not my problem, I have survival to get through.  Some people just don't either know how to deal with it, or what I think is she thinks I was making too big a deal out of things.  Gee . . .sorry I was dramatic.  Cancer.  Hmmm, not too serious, right???

Helen - sorry you had to deal with a real jerk on your last treatment - usually the onc nurses are the best - that's sort of why they are in that profession!!

Good luck on your move to rads - after chemo, it is a piece of cake!!  I'm almost finished, last main tx today and then on to the boosts - finished with all of this major treatment next Friday.

These boards have been my only sane place in trying to figure out what is going on with my body, how to deal with this horrible disease and finding friends who are going through or have been through some of the trials and tribulations we're experiencing on this journey.

Chelev......thanks for responding.......I  am still floored by my sister-in-law's response....but a SISTER?   How weird!!!!!  I, too, am so grateful to have found this forum....I just found it late last night, and I stayed up until 3:30 a.m. reading things that have made me feel so much better!  I never was sure whether some of my side effects were from the Neupogen shots or the chemo....but this site has healped me enormously in feeling more "normal".......Thanks to all of you wonderful people for your kindness and helpfulness to total strangers.  We all have learned a lot from our journies....not the least of which, is that if we survive all of this, our biggest goal is to help as many other women as possible in any way,  that end up in our shoes.

Oh...wow....

 

Not that I didn't expect you gals to have firsthand knowledge and be able to directly empathize with how it feels to be constantly exhausted, completely brain dead and unfeminine to the point of repulsive from being on chemo, but...oh...wow!  :-O

 

:::bursts into tears:::

 

{{{HUGS EVERYBODY}}}

 

But it's so strange...as much as I needed the firsthand empathy, I wholeheartedly wish NONE of you were CAPABLE of it!

 

And my SEs other than the fatigue, chemo brain, yucky taste in my mouth within 5 mins after I brush my teeth and use mouthwash (Biotene in both cases), hair loss, moderately disturbed BMs (I never know what's going to happen when I go to the can for a Number Two until I actually sit down and find out "too loose," "too hard," or "almost normal"), frequent "power surges" (that's my term for hot flashes) and sexlessness don't seem NEARLY as bad as a lot of what so many of you are/were having (ON TOP OF what I have). I mean, my Neulasta shots only hurt while I'm actually receiving them (no subsequent bone pain from them); my nails aren't turning weird colors and falling out; while my mouth usually TASTES yucky, I haven't had any SORES; I only had ONE episode of 'breakthrough nausea" so far (and I didn't actually go so far as to throw up); my white count only dropped to dangerously low levels once so far...and my weight has stayed in its normal range.

 

Chelev, I did read awhile back that you stopped chemo "prematurely" -- since your chemo SEs were much worse than mine -- and in your shoes I'd have stopped chemo too -- I think you did the right thing. I'm glad you're almost done with your radiation (what a nightmare though, it sounds almost as bad as chemo!). I still don't know if my doctor will want to put me on radiation...I think it'll depend on what happens during my surgery. Oh, and what you said here:

 

"I feel bad for my husband, who has been wonderful these last 5 months, but it has to be hard on him, not only because I am no longer thinking about sex anymore, and more than that, who would want to look at me?"

 

And what Nadine said:

 

"We are the only ones who truly understands loosing what we felt was our womanhood and that includes our boob(s), hair, weight gain, no energy and the list goes on.  As far as sex the hardest thing I had to do is tell hubby I had no sex drive.  Hubby never asked nor pushed but I felt I had to tell him the truth.  He told me that since I was sick it hadn't entered his mind."

 

Boy have you two ever got THAT straight! I am so glad I'm not married, and (for the first time in the 6-and-a-half years we've been together) also glad that my Pack Rat and I are in a long distance relationship -- so he doesn't have to see me like this day in and day out! 

 

I think THAT must be the reason why he can be so good about this...and I am totally shocked at the extent of it (he was here last week). But since he hasn't changed his phoning habits, it's not like I haven't told him what's going on (or even that it's been anything outside of his claimed expectations when I originally told him about my illness and what treatment would entail)....back then, and in the earlier part of my treatment when I wasn't quite this far gone, he kept assuring me that (as far as my femininity/sexual desirability were concerned) that going bald and losing my breast were NO BIG DEAL for him, breast or no breast he wants me anyway and my hair will grow back after I finish my chemo.  He even encouraged me to go flat on the right after my mastectomy when I told him I didn't like what I had learned about, and was strongly leaning against, reconstruction (extra surgery and more pain/protracted disability and recovery time even if I DON'T have complications, beyond the medically necessary removal of my diseased right breast). So he made it EASY for me to officially decide on no reconstruction. And then when I told him how I'd stopped thinking about sex and it made me feel like the living dead, he said not only did he understand, but he also suggested that maybe he could "inspire" me (but would understand if I was too tired or not want to).

 

So last week he was here for a few days (which included my birthday). Though we talk on the phone a lot between visits so he was up to date on my current feelings and doings, this was the first time he actually got to SEE The Creature I became. The last time he was here before this I still had hair -- short and ugly, but I wasn't yet a complete and total unsightly eyesore (or as brain dead) as I got and still am. Even though he'd repeatedly SAID it wouldn't faze him even slightly (and told me I was worrying over "nothing" if I thought my condition and appearance would scare him off), I was still not planning to show it to him in full. That is, I knew I couldn't sleep with my wig on, but since I can and usually do sleep wearing my scarf, I took some very small comfort in the fact that I didn't have to let him see me bald. My right breast has been misshapen since before I started chemo, and that doesn't bother me nearly as much, I haven't had a single problem with him seeing my naked BODY on account of that -- but BALD? NO WAY I told myself. But he said he WANTED to see! He lies down on the bed naked and smiling in invitation; I got naked except for the scarf (I took off the wig and put my scarf on in the bathroom with the door shut, then took off the rest of my clothes in the bedroom). My first response to him saying he wanted to see my naked HEAD was to tell him I'd rather not since I'd never heard him previously mention having sexual fantasies about bald women, to which he says, "Why don't you give me a CHANCE to?"  So I decided to be "brave" and take off the scarf, but the moment I did (and caught a glimpse of myself in the dresser mirror), I was in tears. He was instantly sitting up and hugging me, telling me over and over again to relax and how it wasn't bad at all and yes he still wanted me!  :-O

 

And (although I only went openly bald in front of him that first night and wore the scarf for the rest of our visit, because *I* still can't stand the sight of myself), while he was here I got to find out that while no I don't have my once overabundant and extremely vigorous sexual energy to "do it" every single night, yes it IS possible for him to "inspire" me and, everything still works (including orgasm; no energy for my former multiples but I can enjoy one at least, and somehow "only one" is now actually enough!). I also found out (not surprisingly though given my severe fatigue) that for what sex we're going to have while I'm on chemo, HE has to do most of the ravishing. I only had the energy to actively ravish him once -- our visits before chemo not only did we do not just more often, but equal mutual amounts of who ravishes who.

 

You're probably all wondering how I could have been such a raving sex maniac but still be able to accept a long distance relationship -- besides that I'm just plain weird (and that other than his geographic undesirability, he's everything I ever wanted in a man) -- chalk it up to a fantastically vivid and emotive-visceral imagination to go along with my skilled right hand. The vivid imagination died when the chemo brain set in, naturally, so maybe THAT'S why I stopped thinking about sex...and since my Pack Rat went back to his Nest in the North (plus *I* have to see and deal with The Creature day in and day out), I'm back to total zero sex drive. But if last week is any indication, at least it'll come back a little when I have my Pack Rat's direct "inspiration" (maybe in a couple more weeks, since on July 1st he starts his new job, which is four hours closer than his Nest).

 

hrf, you really and truly hit the nail on the head here too:

 

"But when you don't know who you are anymore and the person looking at you in the mirror is a "blob" who has no physical resemblance to who you used to be, it's enough to make you lose hope for anything."

 

Amen, sister! You took the words right out of my mouth! And I'm so glad you finished your chemo. I hope you get yourself back really soon!

 

Back to Nadine for a moment....about anti-depressants....dunno if I'll go on any yet. But if anti-depressants don't help the damn chemo brain, which limits my ability to do some of the things I enjoy (being really active on my forums, email correspondence, playing my sims) and totally precludes others of them entirely (everything creative and/or requiring attention to detail), which if only I could do in full, would make me feel a lot better -- I don't see what good they'll do me. My oncologist had from the start recommended I see a psychiatrist. My cancer center is part of a regional medical center which includes a behavioral/psychiatric department, so I made an appointment there. As it happened, I got a counselor right away, and I've been going for counseling every 2-3 weeks (depending on my chemo schedule: I can't go anywhere during my first week post-infusion and only barely manage to get my Neulasta shots), but it's just "talk counseling" and I don't feel it's helping (other than his recommendation that I apply for Social Security Disability on account of my Stage IV IBC, which I did). He tells me everything I'm feeling is "normal" for someone in my position -- okay fine, but being told it's normal to feel like shit doesn't make me feel BETTER. The actual psychiatric evaluation (by a "real psychiatrist" who can prescribe medication, as compared to the psychotherapist I've been seeing) -- earliest date they could give me for that was June 18th, which is tomorrow. So tomorrow morning I'll find out if I "need" anti-depressants, and if I do, what kind I can even TAKE that won't interreact badly with my chemo cocktail/Neulasta shots/anti-nausea meds.

 

Paula -- with a family like yours, you don't need enemies! How horrible! And even though your husband is like my boyfriend in that he still loves and wants you anyway, I still feel like my boyfriend was only "just saying it." I guess it's really true that we need to feel for OURSELVES that we're beautiful and feminine, that no matter how much our men say we're still desirable as women, it doesn't matter unless WE think that's true.

 

Well OK...it took me 5 1/2 hours and 3 cups of coffee to write this post and now I have to go eat something and lie down for the rest of the day so I can hopefully endure having to go out to the headshrinker tomorrow. (Just going downstairs to get the mail has become an ordeal!)

 

Thank you all again for your understanding and empathy, and I wish all your darn SEs would go away!

 

~Lena.

 

Amy ~ Congrats on having great #s for chemo tomorrow!  Each time those numbers come in, it's like a little victory!  For what it's worth, my onc basically said the exact same thing to me about survival rates.  He did give me some numbers, but told me that Herceptin changed the whole landscape for our survival, and it's still too soon to see what a significant impact it has made.

caycaye - sounds like your sister-in-law and mine are twins. I now know how she feels, so I no longer worry about it. If one day she surprises me and calls I will be polite, and remember that she is my husbands sister. And I love my husband, so polite it will be. 

I am so glad I came to this site last night.  I feel so much better knowing that my problems are "normal" side effects!  LOL! 

 I made a vow NOT to complain about my treatment.....or anything else, because I realized early on, how much better my prognosis is than so many other people.   I am willing to go through whatever is necesarey to be cured.  I sit next to people at chemo every time who have virtually no chance of survival, yet they are in good spirits and still hope for their miracle.  I believe in the power of prayer, and I have been prayed for by so many good people that have no reason to waste their time praying for me, exceot for the charity and compassion in their hearts.  So, even though I have been disappointed in the reactions of some of my family and/or friends.....I don't really hold a grudge.  People are only capable of caring or doing what they are capable of.  It is what it is....and like I said before,.....I would rather concentrate on the "positive" in my life.....which is a LOT, especially compared to some people.  And I always feel better!

Good morning! Got my 4th TCH yesterday - only TWO MORE TO GO!!! I am so glad to be moving steadily through this.  Everything went (mostly) smoothly but a few rough moments. 
I was drinking my water (as everyone tells me to) and had gone to the bathroom.  As I stood up to wash my hands afterwards, I noticed that the tubes from my port were FULL OF BLOOD and totally red.  I almost lost it. I started to panic and almost pulled the emergency cord next to the toilet but kept my head (a little bit) and washed my hands quickly and entered into the chemo room and called my nurse. I was terrified seeing all that blood in the tube.  As you all probably know, this is something totally normal that happens if your bag becomes empty and when they put a new bag on, it goes back into you.  She kept insisting it was totally fine and even laughed at me a little to get me to calm down. She said it shows the port is getting a 'good draw' and working perfectly. But it was VERY SCARY to me and took me a little while to calm back down. Has this happened to anybody else? If not, at least you can learn from me and not be scared if it does. I think I was scared enough for ALL of us on this board.  But the rest of the tx went without incident.

Then later on, a woman came and sat in the chair next to me. She was probably mid 30's and a large strong woman, dressed in kind of hip-hop style and seemed really tough. We had a nice little talk and she said she was in tx for bladder cancer and got chemo weekly but missed some due to low WBC. So she had just given her blood and was waiting for the results and sure enough, the nurse came out and told her that her count was too low - no chemo for you today. It was so heartbreaking to watch this big strong looking woman BURST INTO TEARS and start begging not to have to get the shot. "Oh please don't give me that shot, I can't stand the pain of it, I don't have any more pain meds for it. Please don't give me the shot until the doc gives me some more pain meds."  I had told her earlier about the Claritin trick that I had read about here, but I don't know if she truly absorbed it. She just kept saying it gave her terrible flashes of pain in her bones & she couldn't stand it.  It was an emotionally wrenching experience to observe her in so much emotional pain. I felt terrible.

But I made it through and came home and everything is going fine so far.  Couldn't sleep much last night as usual due to the steroid.  But I am doing fine.  I feel like I'm solidly into the 2nd half of my chemos now and am encouraged.

Thank you all so much for your support!

Amy