Multiple questions on this journey..

[Emelie]

I have come so far and yet I am now realizing I still have a long way to go. Every day brings new surprises with this disease. I have completed my chemo, had the MRM on the left breast, and 1 of the 13 every 3 week treatments of Herceptin, with radiation starting next week, so I thought that my hair coming back in, salt and pepper as it is, would stick around. Well, now that very short hair is coming out on my pillow and towel when I shower. Is that normal? Have any of you had this happen? Also, I have the strangest eyelashes now. They are very thick, curly, and they stay very short. What is up with that? And, have any of you had terrible pain down the arm on the side you had your mastecomy on? I can not straighten out my arm without a sharp, stabbing pain running down to my wrist. Is that also "one of the side effects" of breast cancer?
Any replies will be ever so appreciated. I feel like a big, cry baby sometimes and that is just not who I am. It does help to know that other ladies have experienced all this stuff too. Somehow that validation is very important for me to carry on with through the "mother of all battles".
Thanks once again for any help.
Emelie

[Margerie]

Hi Emelie,

I am a little ahead of you on a similar path. I am a year out of chemo. I was also surprised how hard the post-chemo days were. My onc had warned me it was perfectly normal to fall apart a little once chemo was finished. He was right. I was in battle mode and put off a lot of the emotional aspect, just dealing with getting thru chemo. It hits you that there is so much more to go thru (in my case oophorectomy, menopause, thyroidectomy, reconstruction) and you just plain get tired of it. And then you realize it can be much worse. And the cycle continues...

But now I have many more good days than bad. Actually I don't have many bad days at all- knock on wood. Have hope that all your hard work will pay off!

About the arm pain- I had that also after my MRM. The "burning arm" syndrome (as I named it) is very common- part of the healing process. I think it lasted a few months. I have complete range of motion and no pain now. I started with a very tight armpit, but worked it out. You can consult with a PT if you feel you aren't making progress.

I admit I was kind of obscessed with my crazy hair. I had those weird coarse eyelashes also. I actually lost most of my brows and lashes 2 months after my last taxol. Thankfully they grew back in normal after that. My first hair back reminded me of tennis ball fuzz. I don't remember it falling out, but normal hair did start growing in around it. I felt like a newborn baby. It at first was half gray, and I colored it with some natural (no ammonia) hair color- my avatar pic. I am happy to report it is back to my old brunette color now.

Communicating on these boards is also a godsend.

Aww- being a crybaby, I joined that club too. What really helped me was expressing myself in the form of drawing cartoons about this crazy experience. Some of them are funny, some heartbreaking, you get the picture. But putting them down and sharing has helped "validate" these aspects for me. I am sure you have many wonderful days ahead and soon you can think- "Hey, this time last year I was bald!"

[Emelie]

It is so great to know I am not the only human that is experiencing all the weird stuff that chemo can do to you. You hit the nail on the head saying you felt like a tennis ball.
I really like your suggestion of cartoons. I have put my thoughts into emails to my closeest friends, but drawing them out may be a better idea.
Thanks again for taking the time to help me feel "normal".
Good luck on your journey,
Emelie

[LAURIE]

I have 11 rads left so I am very close to were you are right now. I was so upset a week after my last Taxol and I still felt icky. I wanted to have my energy back right away. I am feeling better now but my counts are dropping and had to get a Procrit shot last week. That was a disapointment.

As far as the hair, what a mess it is right now. I had A/C then surgery, so my hair grew back some when I was off chemo for surgery. Then Taxol came and the hair on the top of my head fell out and now I am so patchy, I will never laugh at a comb over again. I am using Nioxin, I am not sure if it is working yet.

I also had the same arm pain, I really hurt to do my lymphedema exercises because of it. The pain is gone for right now. I have shocking new pain, CRAMPS!! I started my cycle again. Just 2 months out of Taxol. I am excited that my ovaries had not shut down, as I still hold out hope to have a child some day. Crazy Cancer.

My sister mentioned to me yesterday something about having cancer and I replied "no, I don't I am getting treatment to prevent cancer, but right now I am cancer free" My family really enjoyed hearing me respond like that. I 'm not sure if I totally believe my words, but it sounded good. I guess this is just all part of the emotional journey I have been put on.

Good luck with the Rads, I am just now starting to get some side effects from it and I only have 11 left.

[Alice]

Hi,

I am a little further out than you are. I just had my 1 year out of treatment (not including herceptin which I am 9 months out of.) When I had my surgery I thought that I would never put my arm above my head again. Even on days that it didn't hurt,I was still limmeted in range of motion. Everything was so tight. A friend of mine never had much problem with this and I thought It would never get better. Let me tell you it does get better, even without your noticing it. As far as the pain is concernd, I still have a fair amount of pain. My onc described it as there are days you will have not so good days and then there are days that are bad. Everyone is different. My friend has no pain or trouble from her arm at all. I still think it is a small price to pay. If you have radiation you need to stretch for your arm and the area for at least a year. I still can tell when I haven't stretched for a couple of days. It all starts to get tight again ( not at all like before but I can tell the difference) so we all need to be dilligent. As for the hair falling out again, I still to this day, when I see hair on the counter I freak out. I sometimes think the chemicals dont leave our systems right away and this causes some symptoms to persist.