Starting Chemo March 2015

ninjamary

I just joined the FB Group! I just got back to FB. I find it a bit boring anymore, but maybe now it will be much more interesting.

Taxol though much easier on side effects makes me very sleepy the day of infusion. I just woke up from a 4 hour nap! My MO did tell me to expect this and it has gotten progressively worse each treatment.

We are experiencing a heat wave on the East coast. I have a hard time tolerating heat when I'm "normal" . Chemo adds a twist on that where I can't even stand to be outside for more than 5 min.

Italychick

I'm okay, I have had a few weeks to process the information. It doesn't change that my dad is the man who raised me, but it was a shock. My dad has always favored me over my four siblings, and I talk to him on the phone all the time. I can't un-think of him as my dad.

As for the issue when I was a kid, now I wonder if that had anything to do with my current situation. Probably not, but I will always wonder. And my mom is kind of screwed up in the head a bit, lives on Vicodin and is diabetic, overshoots insulin so she can eat candy bars, so I can't ever get the 100% truth from her because she makes stuff up. I haven't talked to my dad about anything, probably gonna let that all go because he has early stages Alzheimer's I think and there would really be no point. They divorced a long time ago and she enjoys anything that makes him look bad, has always been jealous because I am closer to him than her.

Italychick

Katy, .8 ? Wtf, how did that happen? I thought they are giving you shots

Trvler

Of course the man who raised you and was there for you is your dad.

pboi

May I join you?

I recently discovered these boards, and have found such comfort in reading these threads.  I technically belong in the January 2015 group, but it doesn't appear to be very active right now, and I could use some support. I confess I have been following  your thread for a few days, and you women are amazing!  I have a very supportive family, but as supportive as they are, sometimes they just don't "get it"  I have a hard time dealing with this diagnosis, and it doesn't help that I was also recently diagnosed with papillary thyroid cancer too. 

I had DD AC, and today I completed 12/12 weekly Taxol.  I'm trying to be excited about completing chemo, but instead feel anxious that chemo, as much as I hated it, is gone.  Am I crazy to think that way?

Will your group "adopt" me please?   

eheinrich

Welcome! It certainly is nice to find folks who do get it. Congrats on finishing! I also feel weird about finishing. Been a bit panicky about the thought of recurrence.

SizzleStitch

I have been lurking these past weeks...sorry...I am 3 weeks today from my last Chemo. I am definitely having the post treatment anxiety. I am struggling to get my head in a good place. I did go to a support meeting last week that helped some but I need more. :-(

I have been lucky so far with bad extended SE. Fatigue is the worst other than my brain still not being up to par. The most irritating thing is that even though I wore ice masks, my eyelashes have now decided to fall out! I have my 4 year old grandson coming with my son to visit at the end of the month. I was already having a hard time dealing with telling him about my baldness (I can't wear a wig the whole time..it is so hot). Now, I won't have eyelashes.

Katy, I am sorry you are having it so hard. I hope things get better for you soon. I am sure going back and forth about the last Chemo is hard. I know I had to do whatever my MO told me or I would kick myself later if something happened. I think we are alike in that way..??

Dang, I hate that I can't go back and look at the posts on other pages to see what else I wanted to comment on. FB would be better.. I can't remember anything :-/

Thought you all might like seeing this. At least she is saying it isn't easy.

http://www.huffingtonpost.com/2015/06/10/joan-lunden-cancer_n_7556074.html?utm_hp_ref=breast-cancer

Trvler

Welcome, Sizzle and PB. Of course we don't mind you joining our group.

Carrie37

Welcome to those new to our group! Anyone is welcome and I must admit we are pretty awesome! Katy!!!! I am so worried about you! Can you catch a break?!? .8??? What the FFFFFFFF?

Theresa, that is a lot to deal with but it seems you are holding up well. You are such a rock for this group.

SpecialK you are so wonderful to come back and share your knowledge. It is so helpful!

I am so excited about our FB group. Thanks for setting it up Molly!

Jackbirdie

PB- consider yourself adopted!

Thanks Sizzle. I think you definitely get me. That's what I'm thinking. I just want more reasons that make sense so when i suffer do ican repeat to myself why I'm doing it.

Theresa- they ARE giving me the Neulaststa! every time.

They said without it I'd have no wbc at all. Dang is right! I guess that's why I don't feel very good. I have two weeks to bounce back. They can always delay again, reduce dose, or just stop. Today I'm going to work on getting strong. Walked a bit today. I don't have to make any decisions right now. Platelets, wbc, rbc, and a few others were also quite low

But my liver is hanging in there! YAY!!!

Carrie37

Today I was telling my MO about my "jelly legs" and asking why that could be happening. She suggested I ride a stationary bike! I immediaey thought of you Theresa! And then I ate a cookie. Mmmmmmm

I think steroids are making me chatty!!

IndyGal35

Katy, that is incredibly low. Are they going to increase your shots or give supportive therapy to help? I swear you can't win for losing lately.

Theresa, I had a similar experience when I was 17. Even though there were good intentions behind the secrets, it took a long time to work through the trust and lost time with another side of the family. Good news on the MUGA though! You really are a rock star!

Thanks for all the great info and hope bouncing around here today. I'm feeling pretty rough from round #5, but seeing so many of you crossing the finish line keeps me going. If all goes well, I have 19 days until my last dose. Herceptin will continue, but The Big Nasties will be over

ksusan

Carrie, I'm wobbly the week after chemo/steroids/Neulasta. Carbs, protein, and water help a lot.

Carrie37

Sizzle, thanks for sharing the article! It is good to know that celebs have the same fears.

Italychick

Carrie37 lol. I have a few cookies left from Katy, I think I will break them out tonight. You have corrupted me today lol!

Jackbirdie

there are no additional supportive therapies planned. They said go home, rest, wear a mask if you have to go out. But better not to go out. It's a good thing I got my super duper atti-Tutti adjustment before #5 last Thursday. It really is a laugh a minute around here. And my heart is overflowing for my Jack. Bred to chase. He's being so good. I'd say that's a positive

Carrie37

Tutti is SO dang cute!!!!!! Take good care of yourself!

SizzleStitch

Thanks for the welcome Trvler but I have been here for awhile...just changed my profile picture. :-)

Carrie, if you didn't watch the video (it didn't load fast for me so I missed it at first), it was good too.

I am trying to get back to doing my crafts and just finished a pretty pearl and bead bracelet... At least it kept my mind off things for a couple days...well part of the time, at least... Now to find a new project.

wpmoon

Theresa and Katy - love and hugs to you both! You two are so integral to this group.

Joined the fb group too.

My energy is so so low.

Trvler

I am sorry, Sizzle. I misunderstood your post.

SizzleStitch

Katy, yes, rest. I took it so easy, especially when my WBC was low. I sat in my lazy boy, drank Whole Foods 365 water (it was recommended by MO's nurse) and read the forums, emails and Facebook. I didn't go out much and didn't eat anything raw. It was hard not to eat salads especially when I had to avoid carbs with my sugars so high from steroids. Be extra careful and wash your hands often too. I hope your count comes up soon.

Italychick

Katy, wish I was there. I would share my super dooper absolutely delicious cookies that were sent to me by a wonderful and caring person - that would be you! They have helped me more than you can know, and even when I don't eat them, I open the freezer and look at the remaining ones because it touches me that somebody would be so caring. Big hugs, and so sorry about the baby whites. Have a glass of wine tonight, wtf, it can't hurt. Or some tequila.

Just no anal butt waxing if you drink, okay?

SC_Coqui

Theresa - that's pretty shocking to find out that info.

Molly - I sent both a friend request and request to join the group.

I just had Taxol #5 or 6 today (lost track) and I agree with the tirdness, as soon as they gave me the Benadryl I wad out for most of the treatment which I haven't done before. I needed the nap since we were going to an early evening kids birthday party.

Having my son to take care of means little rest. This weekend DH goes off roading again with some friends to Harlan, KY so it's up to me to keep DS busy. We have a pool playdate early Saturday morning, a water park play date Sunday morning and a house playdate Sunday afternoon. I would have thought all this running around would have me lose weight, but nope. I've gained an average of one pound per week. I feel miserable. Today was our ten year wedding anniversary and we didn't get to do anything. I was looking at old pics when we first started dating and when we were recently married, even when I recently had my son. I want my body back!

I have funky blisters on my hands from the taxol, fuzz on my head from the new hair growth, my eyebrows are gone, my eyes sunken in and I'm 15 lbs heavier. *sigh* guess we all hit our pity party moments!

slothabouttown

Thanks Molly, I just requested to join the group ( my first name is Linda)

Special- if my MO doesn't plan to do one after treatment, is it reasonable to ask for the tumor marker test? I already have post chemo anxiety and I think some kind of a "looks good for now" would go a long way to alleviate the stress. I'm also going to check out your links.

Welcome to newcomers! This is a fantastic group, I think we'll be counting on each other for some time to come . Some of us are past the finish line for chemo while others are on their last treatments, so these are exciting times. The best thing about this group for me has been seeing my own fears, questions, side effects mirrored by everyone here. It makes me feel "normal" while I navigate some very abnormal times.

Katy, pump up those white cells Girl! I was going to ask if you were still juicing but that's probably not safe with those low counts. Glad you've got your little buddies to keep you laughing!

lovlilynne

Hi, sorry to butt in. I'm on the April group, but have been following to see what is ahead for me.

Just wanted to comment/help if I can - Sizzlestitch, you can open another tab or window and and open the DB there to look at previous pages.

My .02 on a Facebook page - it really is a crappy forum for sharing/discussion. Actually, DBs aren't that great either because there's no threading or searching. If you really want a place to keep on sharing, I would suggest you create an email group. I know that Yahoo has them. You can choose to get an email for every post OR get a digest of messages OR just read them on the website (sort of like coming here and reading messages) and never get an additional message in your inbox. Because it's email, messages get threaded by subject line, you see who sent them, include message text in replies, and they are searchable. In addition, the group page has the ability to post photos, files, and create events (like birthdays, for example) that can send out reminders to the group. I've been on a couple group email lists for years, and I can say that they are much more user friendly than DB or Facebook as far as a medium for sharing as a group. Oh, and you can have it be a privite group (invite or approval by group moderator only) too.

Lynne

mysunshine48

Carrie, I have jelly legs too, for about days 3-10 after treatment. I like to be active and find it difficult to not be able to do much.

Katy, I have been reading all your posts. I love Jack and your new kity. And, am so sad that you are going through all the agony, and, now the low WBC. You know I live by myself too, and find it a chore to eat enough calories. Just too much trouble to actually cook food. I have to make an effort to eat whstvI know would be best for my body to recover. For example, one time I ate today, I had 2 hard boiled eggs, a small can of tuna and a cut up tomato. Not the most appetizing, but lots of protein.sometimes I feel so bad, it would be easier to just not eat than to walk to the kitchen! Are you sure you are getting enough protein and calories? And, we PM a while back. You and I have pretty much the same diagnosis. I am having 4 TC.....was not offered 6.

I did not start chemo until the first part of May, but read this board everyday to find out good stuff and you all are the greatest. So, I joined the Facebook page. Hope that is OK.

I don't understand all the estrogen factors either, but know my number is 98%. I need to read the links Special K added. I wonder if that means I have that much more to get rid of....or whatever. All this is scary.

Got to go to bed, but nights are not fun. It seems like I can only sleep for 2 hours at a time. I am up all hours of the night! And, now a stitch in my expander, under my arm is sticking out and about ready to come through my skin, so that hurts too! Yes, a life changing experience. But, you ladies have helped me get this far!

SueH58

So I wonder what a cell that is estrogen positive looks compared to non...

Theresa, I didn't know you could only have radiation once for your whole body, I thought it was once in the same place. You're such a trooper. Hugs to you

Katy, so sorry your levels are so low. The low RBC counts may be adding to your fatigue. Can you handle some red meat? I have been eating foods that keep up red and WBC counts and it seems to be working. But I know I'm lucky not to have an aversion to foods (I never lose my appetite).

Hugs to all. Good thunderstorm brewing to help me sleep.

Meme117

Theresa glad your heart number went up. I get an echo but MO never called with result from 2 weeks ago, I'll need to ask on Monday. We really do have to advocate for ourselves.

And what skeletons you're talking about, how are you doing with that news? I'm horrible at keeping secrets can't imagine for 49 years.

What is PFC , post -- chemo. I'm hoping for quick recovery but everything I read says not, to let your body have time. Geez I just want to get back to normal, or as normal as possible.

We are in a heat wave for a few days so no walk today only a short doggie walk. My head was a sweaty mess when I returned, still wearing the wig.

Terry congrats on finishing chemo! And whining is allowed.

Katy sorry for the low count, how was everything else?

wpmoon

PFC = Post Final Chemo

...but we all know what the F REALLY stands for

Italychick

sueH58, since it was supposedly in my upper spine area, that would have radiated my chest cavity. I talked to my primary care physician, he said don't freak, just be diligent in follow up monitoring and if it comes back then I can think about the mastectomy route. I haven't told my MO yet. My primary doctor said stiffen up your backbone and go tell her lol. They will probably say it was so long ago you can do it again, but I don't want to take the risk because I know if you get radiated once for breast cancer, they can't do the same spot again. Oh well, time to put on my big girl panties and hope I don't shat myself lol

Meme, it is what it is. I live in California and they all live in Illinois, so distance makes things easier. I have lived out here for about 30 years, so I have been removed from all the Italian family drama and gossip for a long time. I ditched my wig Wednesday for work, only doing do rags now, and man, am I happy!