treatment (a/c), hair loss, tears, fear

NatureGrrl · April 2009

I know I'm repeating a bit from post to post but I'm new so just a short fill-in: just diagnosed a little over 3 weeks ago, first adriamycin/cytoxin 2 weeks ago. So I've barely had time to assimilate all this.

Last night I went to my first breast cancer support group (meets once a month) and although the women were great, it was depressing. It was a 2 1/2 hour meeting and I had to leave before the end so I didn't get phone numbers. Maybe next time.

There were messages of hope but there was lots of sad news, too, and I found it really hard to listen to it all.

What set me over the edge was someone talking only marginally about her a/c treatment and how awful it was.

My first a/c treatment, I had lots of fatigue for 10 days, but then I bounced back and have been feeling great.

Now I'm terrified that I'm going to get majorly sick from this treatment. It's a long story but when I vomit, I often get dehydrated and then I have seizures. So I'm terrified of getting sick to my stomach. I haven't had seizures for a long time and the last time I had them they were mild, but still, I don't want to go through it. My oncologist has assured me that that isn't always true, that plenty of women don't get sick, and I have Zofran ODT and ativan for if/'when I need it, but I'm still trying to deal with the fear.

How do you deal with fear? I came into work and dumped on a male co-worker but it was ok, I work in an agency of social workers, so he knows what I'm going through and was cool with it. He shaves his head so we talked about that, too. Just talking about it out loud seemed to help.

Next -- in the middle of the night I woke up and had a sore spot on my scalp.

Sure enough, this morning my hair is coming out. My scalp is tingling, too. So I'm biting the bullet and getting it shaved at noon. I can't bear the thought of having it come out in clumps, and I just want to get this over with and get on with things. Many of you (thank you!!!) have already given me lots of support on this topic, and intellectually I know hair loss is really and truly no big deal, but emotionally, I find I'm sad and in tears.

It's all happening so fast. It's been just over three weeks since I found out I even have cancer (although of course there were a couple of weeks of limbo before that) and I've already been through so much, and it seems like just when I catch my breath (I had 10 days of serious fatigue but rebounded Saturday and have been happy to have a couple of days of energy), I get hit with something new.

Will it ever settle down? Will I ever have a chance to catch my breath and feel normal for more than a few days? (Whatever "normal" is!).

I'm caregiver for my mom and although my brothers promised me regular breaks, that hasn't happened. So this weekend she's going to be gone for 3 nights and for the first time in nearly a year I have time alone. I'm so looking forward to that!! I just don't want to spend it crying or wrapped up in fear, and I won't.

But for the moment, if you have any suggestions or words of support, I can use them. Today's going to be a little rough.

Thanks for the hand-holding. I think of myself as being so strong but lately I'm just a big fat crybaby Smile I know y'all understand, though. I'll get through this. Thanks for reading.

thenewme · April 2009

Wow, you've been through a whirlwind in just 3 weeks!!! I cried (and cried and cried) when I was diagnosed in November 08, and the crying really has calmed down since then. It's only recently that I don't burst into tears the second someone asks how I am. It's normal to feel just like you are, and it sounds like you're doing all the right things! As for the AC, I had 4 cycles and the nausea was pretty predictable and the same each time, so maybe since you did so well your first cycle you'll be good for all of them. As for the fear, I'm not a good one to answer that but I can definitely commiserate with you! I'm trying to deal with one fear at a time.

There's tons of great info and support here, so definitely stick around and read a lot and ask questions - someone here has great advice for EVERYthing! Good luck and welcome!~

NatureGrrl · April 2009

thenewme, thank you for your reply (love your handle, BTW!). I especially appreciate hearing that my first cycle may be a prediction of future ones -- others have said that to me, but then there are the people who keep telling how sick I'm going to be (NOT appreciated!!! I know the possibilities but wish people wouldn't feel compelled to predict my future...). I cry often and sometimes without warning (those "how are you?" questions can really catch you off guard, can't they?), and at times feel this large sadness over everything, but the rest of the time I feel so positive and hopeful about the future. So even when I'm feeling less-than, I try to remember the times I feel good, and hold onto the fact that I'll be there again.

Women are amazing! thank you again for the reply and support.

diana50 · April 2009

please give yourself a little time to make an adjustment to ALL of this. i remember clearly being totally overwhelmed; especially in the beginning. the chemo you are getting is tough; HOWEVER..remember the chemo's purpose is to kill those pesty cancer cells in your body. i used to visualize any leftover cancer cells..."shaking in their boots" every infusion. the message is that they are NOT welcomed in your body and the chemo totally "takes" them out.

support groups can be helpful; but yes, often times they can be draining as well. i remember that there were women worse off then me in my group but also women who were not. i ended up making friends with 2 members of my group...2 out of 12 . my suggestion is to give the group a little time; but if it makes things worse...reconsider. i actually tried two groups..and found one i really liked.

be sure you talk to the nurses/doc about feeling so sick from the chemo. they have meds that can help. my experience was the chemo would hit me hard...after the infusion...and then i had a recovery period....until the NEXT one. lol "how are you" is a tough question...opens up a lot of different responses. i always wanted people to ask me "what is it like having cancer?"

the rollar coaster of feelings is pretty predictable. THIS IS HARD.

your head will feel better once all the hair follicales are out. i remember even right after i had my head shaved...i still had some needle pain if you know what i mean. eventually,. you will have a nice soft bald head with no pain.

something that helped me; i used to take a couple of hours every day with NO interruptions. i cried...i prayed..i rested...i cuddled with my cats....i also used a tape recorder to journal how i was feeling. it helped me to "get it out". there were tons of tears...fears...especially in the beginning. once i got really mad because i was sick of people telling me to be "positive" i shouted out and said..."i am sick of being positive...cancer is NOT a positive disease" i was with my two best cancer friends....and after my outburst...we all erupted into giggles. just be how you feel...give yourself some time to digest all of this...ASK/TELL your brothers they need to help you right now if you can. family dynamics can be tricky..but time alone will help you assimulate all of this. hang in there. one day at a time. you WILL...even though you at times don't think you can...you will walk through this experience.

diana50

Anonymous · April 2009

Nature-the things you have described fit me to a T++++++

Give yourself time, allow yourself to feel all these feelings that are swamping you....deal with each one of them as they come......

There is a thread here called "Please Help", the ladies on that thread early on described this journey as "following the yellow brick road to OZ"....the thread was started by a ladies in the UK that is young and was extremely scared of this journey.....try to take one day at a time, one step at a time and you will come to the end of your journey before you know it....

Sounds silly doesnt it? I remember all too well how each day seemed to drag and how each tick of the clock at first felt like I was running out of time......like I said earlier, allow yourself to have the feelings and deal with each one as they come, concentrate on putting on foot in front of the other each day!!!

Hugs

Jule

spar2 · April 2009

Nature, there are so many good meds for nausea now days, I think I cried for the first year about everything. it has been over 5 years now and I am doing fine. You will need to remind your brothers men are just not like women, they just don't "get it". You will have good times again and everything will eventually get better. I am praying for you and sending you big cyber hugs. Sherry

scareds · May 2009

Hi Nature Girl,

I just finished my 3rd A/C treatment, and please clam down. It is okay. I was incredibly scared at the beginning, but I ended up realizing that my fear, anxiety and apprehension was much worse than the actual chemo. How you made out the first cycle sets the stage for the rest. Ask your nurse or doctor for ativan to help get you through this. It makes a BIG difference. Softens the anxiety. A/C is okay. You'll be fine with it!

LorenaB · May 2009

I just want to add that I went through four A/C treatments a year ago and I didn't throw up, not even once. I felt queasy at times and ate a lot of crackers, but the anti-nausea meds really do work. If you are very nauseuos let them know and they will alter the meds for you!

Also, for me the hair loss was not "no big deal" -- it was not about vanity, it was about my identity. So go easy on yourself, let yourself mourn. And then find a solution that works for you temporarily. For me, it was a "wiglet" (half wig) that resembled my real hair and several fun hats that helped me to feel normal. Whether it's a wig, scarf, hat, or going commando -- find what feels good for you.

In my case, the fatigue lasted longer each treatment, but the side effects didn't really change -- so once you get on top of them, you'll be ok. Best of luck to you!

REKoz · May 2009

Nature Girl- My heart, and I'm sure the hearts of every sister here go out to you. This is absolutely a terrifying place to be. We've all experienced your fear and are here to support you through it.

I have only one comment to share on the nausea issue. I preface it by saying I do not and am not associated in anyway with the company that makes this drug! If your nausea is not relieved by zofran or the others, demand EMEND! Though not on your chemo cocktail, I started off with zofran which did it's job in the beginning. As I got further into chemo, I felt more nauseous but chalked it up to "the cumulative effect" One cycle was miserable and after the second, I swore I just couldn't go back.No throwing up mind you but on that edge 24/7. When I finally expressed this to the Onc., he wrote out a script for Emend, Chemo after that has been unbelievably tolerable. No nausea AT ALL! Yes, fatigue and all that but without feeling so sick, everything seemed easy.

It's expensive- $100 a pill (ridiculous right?) but surely with your history insurance would pay? Just don't do what I did and spend one second overwhelmed with nausea and think there's nothing that can be done. That's probably my biggest chemo regret!!

As for the hair, yeah that sucks too! All of this does! But once you shave it, you will be totally relieved of the scalp pain. Just like with the Emend, it's as if someone hit a button and poof...all gone!

You hang in there, you WILL get through this!

xoEllen

NatureGrrl · May 2009

There is so much here that I want to reply to... please forgive the long post!

diana, your post hit home for me. I do use visualization -- my chemo is a fire burning out the cancer, for one, so that I can become tempered, stronger, and rebloom more beautifully than ever. And thank you for your thoughts about support groups. I will definitely be careful about how the group makes me feel and attend or not accordingly.

My onco. has me on several meds to control the nausea so far -- and so far I'm fine (second treatment is this week, Wed.). It's more my fear of vomiting that gets me so locked up -- I just don't want to go through it and the whole seizure thing. But I've heard from several people now who have assured me that the nausea is pretty darned controllable any more, and I'm counting on that to be the case. From my first treatment, I had 10 days of fatigue that slowly worked up to less and less fatigue, and then one day I woke up feeling great! That's given me about 10 days of feeling pretty durned good, although the hair loss caught me off guard, and then last night I sprained my ankle (stupid! just missed the bottom step and twisted it badly!!), so I've had some setbacks in my feeling good period, but I'm dealing with it all ok.

I love your idea of the couple of hours of "me" time. Because I live with and care for my mom (although she doesn't require physical care as much as mental guidance), time for just me is hard, but usually at night I can be quiet and alone. I'm setting aside at least a little time for meditation and whatever else I need. My cat isn't a cuddler but she's a sweetie and she helps, too.

Jule, thank yo also for all your great words. The one day at a time is important, as is dealing with the emotions as they show up. I *know* I can do this and I know I *will* do this but sometimes little things set me off and bring back the fear. I'm so grateful to hear from others who have been there. Nothing you said sounded silly. In fact, I may add the Oz imagery to my visualizations! There was fear and terror on that journey but friendship and hope and optimism and victory, too.

Sherry, thank you as well. I love the hugs! and your positive story. I need those most of all!

Scaredstraight, and Lorena, thank you for the reminder that this doesn't have to be awful and will be fine. I think the horror stories I hear about a/c are those from some years back, but when I hear about more recent treatments, they seem to be much more positive. So I'm counting on that! I have ativan and Zofran ODT, just haven't needed them much (well, maybe the anxiety part of the ativan!).

And Ellen, thank you also. I do have Emend, I get it three days in a row (one before my treatment, then steroids and another antinausea med in my drip, plus one pill for each of the next two days, along with steroid pills). Again, my fear is just that -- fear over what might happen but not fear over what I've experienced so far. I need to be able to let go of the horror stories and just go on my own experiences.

My scalp hasn't hurt since I shaved my head; I still have hair stubble but I don't think it's growing -- I know the hair on my legs isn't! I shaved them a week ago and still no stubble there, hurrah! At least there's some good in the hair loss department!

Hugs and thanks to you all. I'm really overwhelmed by all the responses and caring... y'all are the best!

treatment (a/c), hair loss, tears, fear

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