Starting Chemo in June 2005

Nancy, I took belly dancing for a while a long time ago (70's? 80's?) It was loads of fun, and I've got the belly for it! Now I do Jazzercise and when the choreography is to shimmy, I'm not shy! I felt really good going back to class after treatment last week, I kept it at a moderate intensity, but it felt really good to get moving.

Nancy...great news that you are feeling better

Dana and Scout...wish we could make you guys feel better...if the fatigue gets bad just give into it and rest. We get no awards for conducting life as normal while going through this #$%@. The fatigue is probably your body's way of putting you on notice to rest...the world certainly won't fall apart while you get some, it may feel that way, but it will keep going. Think Pampering yourself instead of giving in. We need to take very good care of ourselves.

JoMac...getting nervous is the pits and not a lot you can do about it...medicate, meditate and cuss a bit. We are all going to get through this!

Group Hug,
Liz

Scout...isn't it amazing how being free of doctor's appointments for any period of time can boost your mood. I only have one this week...and it's making me feel like I'm on vacation Sure hope your cold gets better...I'm sure that's a big part of why you are so fatigued...just not a good time to get one when your defenses are so low.

Silly question...and I'm sure most of you went through this..even though I've adjusted to the idea of losing my hair (all for a good cause)...do you wonder if you would be the rare exception to not lose your hair and buzz cut it for nothing?

Liz

Coach No Surrender...thanks for the advice AND the smiles

This is to send best wishes and hugs to all the Junies going to the front lines this week in our fight against cancer...

Our dear Junies are out there on the front line,
they're fighting and saying "cancer, your *ss is mine"!

We wish we could be there holding a hand,
instead we share cyber hugs across the land.

We're sending you hugs and a smile,
we know you'll feel better in a while.

So ladies, let your Towandas answer our calls,
and get out there to kick cancer in the B*lls!!!

Liz

Thank you coach nosurrender-you are a valuable source to us all.
I had to finally give in. I have felt pretty good up until now-still no nausea but now I feel if I am walking at the very bottom of the ocean. Very heavy and slow. The goos thing about teens is they are helpful. The bad part is they don't understand why I can't just pop up and take them here and there. Haven't they heard of "phone a friend" they certainly spend enough time planning these puttings-on-line. I understand the hubby thing too. My DH gets but not really. He thinks if I just pull myself by the boot straps I should be able to overcome this exhaustion. I am. I am resting. and giving orders to the teens not smart enough to fly out the door at the crack of dawn. I have funny story. They may have found a source of my chronic anemia-I have spider viens in my lower intestines. I can take 2 iron pills for the rest of my life OR they (qoute) can lay me on an operating table, take out my insides and cauterized the veins." LOL LOL I DON'T THINK SO!! -This was over the phone! going back to bed

Woo Hoo JoMac!
I'm so glad to hear you're doing better.
For those of you 'walking on the bottom of the ocean' I know you'll be doing well soon too!

Nancy, I TOTALLY understand the husband thing. I think it's just the man thing in general. You know how they are when THEY"RE sick. The world stops. We're just tougher and they know it!

I think I may be the only one in this group not doing dose dense. I don't have a/c #2 until 7/14. But I'll be watching to see how you guys do! As for me, I'm just on hairloss countdown mode. Day 7 and nothing so far.

Belly dancers, poets and peony painters? What a talented group. Maybe I'll learn how to spin plates or bend spoons to impress you ladies.

Take care June Bugs

Glad #3 went well JoMac-I have #3 tomorrow, and when I read somewhere that emotions kick in after #3 I thought I was in real trouble. Don't think I've posted since like Friday. Went to a wedding reception on Saturday-I know I looked okay but still feel like Marge Simpson with my wig on. Sunday I insisted my daughter vacuum the living room which she had supposedly done 3 days prior-complaining about it not working right-lame excuse....anyway-Jim & I ended up taking the vacuum like totally apart-enough hair for a few wigs! To the point that we had to "burn" it off the wheel axles so it would turn. At the time I did not see anything funny about that, but when you start loosing your hair you might check the vacuum too! Crabby Monday-end of the month hubby hasn't gotten paid for a job a couple of months ago and we are at "that point"-but worked that out Monday. Got my prosthesis and bra late after work so that was a good thing. Tuesday was okay-did tell my current employer that I will be back at the college in the fall and only here part time-which that went better than I had fretted about! Today...OMG I decided I should wear my wig for awhile every day-so okay I remembered my glasses, my hair, my left boob and my purse. Stopped for gas and a cup of decaf. Left work to get my blood drawn, came back and realized that I had lost my prosthesis.Jim called about that time-he was headed home to get clothes as he is headed to clean up at a train derailment 375 miles from here-so I asked him to check the floor in the bedroom---not there, oh-no. Then these two gals at work want me to come into the lunch room (one of them had a mastectomy 18 years ago)...and I am thinking it fell out when I was in there this morning. NOT. My co-workers had a "Hat Shower" for me, I got probably close to 15 hats! About half hour after lunch (I'm still stressing-how am I going to explain the lost prosthesis to where I got it less than 48 hours earlier) I thought my bra felt funny-I had the prosthesis on the right----my mastectomy was on the left! So that story entertained my co-workers this afternoon. Kind of glad I have chemo tomorrow-maybe they will forget about it-or it may just give them an extra day to come up with an idea of how to help me with directions!
I was at the bottom of the ocean earlier this week, but things are great now!
KimB

Glad all of you on the front line made it back safely today



JoMac...So glad to here things were so much better this time than last. I think we were all worried about you.



Nancy...men just react differently. They tend to stay in denial longer and get frustrated when they can't "fix" you. You have to get your rest when needed and can't suddenly develop ESP to know how you will feel tomorrow, much less next week! My husband was in a fog at first. My daughter came here when I had surgery to help me out. It took my husband a while, but now he's "with the program". He's not the type to fuss over me and automatically help me. I had to ask and make sure he realized that I really needed help. At work people were initially seeming to expect me to know when I would be out...I just gave them a copy of my chemo schedule and said I will be in if I feel well, out when I don't. Took some "discussions" to make them realize that I am not 100% and will not be for some time to come.



Kim, how long ago was your surgery? At first I wasn't thinking about a prosthesis...just bought some foam and fiberfill boobs to put in my bra. I find one side is always higher (the fake one of course)and I am looking into a prosthesis. I want to ask the doctor if it's okay now that I'm pretty well healed from the surgery. You cracked me up about making sure you had your glasses, keys and boob...reminded me of my checklist!



Tomorrow will be a week since first chemo and I can feel a difference in the texture of my hair. Going ahead with the buzz cut next Tuesday. I'm thinking of wearing a wig over the weekend just to see how it feels.



Hello and hugs to Brenda, Scout, Bev, Watson, Dana and anyone else I may have missed...hard to keep track of all the names...especially with chemo brain. I think the decadron was affecting me yesterday. I was very hyper and had trouble sleeping last night.



Hugs to you all!



Liz

WOW! Another great poem! Thanks to our Bard- Liz!!!

Now- about ME- Not real eh? Telling only depressing things huh? Nancy you tell your husband from ME to GRAB A GLOVE AND GET IN THE GAME!

First let me say that we really have only one word to explain your husband's behavior and it is this: MEN. Need I say more? Can you imagine if men got BC like women did? Hell's Bells there would be a blood test to detect it BEFORE it became a problem...surgical options that included more choices TO NOT have surgery and those handy dandy little radiation seeds that knock it out and you don't lose a wink of sleep. And then as a parting gift they would get a pill to help them keep it up! (For the life of me I am still trying to figure out that "four hour" thingy..that is bad because???)

In all seriousness, many a marriage and relationship is tested during BC. Even friendships. You will see who is strong and able to be there for you and who is more concerned with how all of this effects THEM rather than WHAT CAN THEY DO TO HELP YOU? After all- you were just diagnosed with a life threatening disease, you have undergone numerous surgeries, you are in the middle of chemotherapy which I still think is the scariest word in the English language (other than Brazillain Bikini Wax), you are about to lose your crowning glory- your beautiful hair that you have fussed with and admired and cursed at since you were 6, you have no idea what is around the next bend and you are expected to predict how peppy you will be on the fourth?!

GET A GRIP BUDDY! This isn't about YOU it is about NANCY- remember her? You know the chick you said 'for better or worse in sickness and health" to? Ringing any bells?

And this is for all of you with lunk head husbands. Don't let them off the hook with the "well he's a man" excuse...he is your husband- he is supposed to be your rock, your port in a storm. If he is not you might remind him that you will be getting better...and you won't be developing amnesia. Kharma is a bitch. And so is Towanda!

If he would like to know about me I will tell him... I was diagnosed at age 39. I had five surgeries, six months of chemo and radiation. I am single and have no family that lives in my state. So I drove myself to every chemo, every test, every doctor's appointment, did all my own grocery shopping, dragged myself out of bed to get to the pharmacy to get the new med the onc was going to try out on me.... in other words- I am here helping you guys because I had to learn all this the hard way. And I don't want any of you to ever feel alone in this. Because that is the worse feeling in the world. So when I hear you have husbands and families I think "great! she has help!" but when I hear that the same people are CAUSING STRESS instead of trying to ease it while you are enduring this marathon from hell I get a tad protective!

My cancer was an extremely fast growing tumor that was the highest on the aggressiveness scale. It was found by pure accident and if it wasn't found when it was I would be in pretty bad shape because it was already invading the chest wall.

I HATED CHEMO. But I got through it. Why? That sucker was invading my chest wall! This is WAR! So I did whatever I had to do no matter how much I hated chemo... And that is the most important part.

What I am trying to say is- you all have awesome attitudes and you have proven your incredible strength by getting though each infusion the way you do (yay Jo!) But make no mistake- this is TOUGH STUFF. And do not let ANYONE diminish it. Not your bosses, doctors or FAMILY MEMBERS. Because you will learn that only WE WHO HAVE BEEN THERE DONE THAT KNOW WHAT THIS IS ALL ABOUT.

In other words- don't take any shit from anyone. You are accomplishing with great style and humor the hardest thing you will every have to do- stand up for yourselves and let your inner Towanda out. She is going to come out anyway! You'll see!

Remember Junesters, as the days go by after your infusions your fatigue will build because your counts are dropping. And with each infusion it is a cumulative effect. So if you weren't so tired this time- next time you may be. BABY YOURSELVES. Your immunity is at its lowest and you are not 100%.

THE GOOD NEWS IS THERE IS AN END TO THIS! It will be over and you can go back to running the world again pampering your darling husbands...So hang in there! You are ALMOST THERE. But UNTIL THEN REMEMBER what Ronald Reagan used to say-
"Don't let the turkeys get you down!"

nosurrender - Thank you for sharing your story. It is heartening to hear. Your very presence here is so inspiring.

I could use the inspiration tonight too. I'm trying not to wallow in self-pity, but for the first time today when I ran my fingers through my hair, I found it contained maybe 6-8 strands.. It's been doing it all evening. I actually hid in my room and lost it at first. No matter how prepared I thought I was, I was still stunned, and so so sad. I know it's falling out for all the right reasons, but still..
At least I have my chemo #2 to look forward to tomorrow morning <sarcasm>. I'm really hoping that I don't wake up with clumps of it falling out, but I know that's possible.

I have a question for those who have already lost their hair. I read that the eyebrows don't fall out until 6 wks. or so after chemo.. but what about eyelashes? Will they fall out with my hair or with my eyebrows?

Hugs to all.

Just a little update to let you know the "mohawk" evening was last night and Mstr 9 years had the most wonderful time seeking revenge on every haircut I'd ever given him. He was so excited when I finally presented him with handfulls of hair as evidence that the long awaited moment had finally arrived.

I am now sporting a very gappy #1 do (thanks to chemo not bad work on Mstr 9's behalf), that well, considering its winter here is chilly to say the least, ohhh but the fun I can have with hats and scarves has already begun, I'll get used to the stares I'm sure, eventually, the best defense is a beaming smile so far.

I'm still taking photos, as I really want to look back on this journey with vision, not just vague memory, because there really is so many special moments to cherish.... forever.

Best wishes to all as the next rounds of chemo take their course.

Fi

Hey Liz,
My head is starting to feel a little tingly, but no loose strands.....yet.
I've already named my wig Sharon. As in Sharon Osborne. My wig looks like a cross between her and 80's sensation Rick Springfield. Maybe I should name the wig Jesse. As in Jesse's Girl?
I wore it a few nights ago to spring on my neighbors. I came outside yelling "Ozzie" and gave them all a laugh.
Oh, well, off to work. Have a nice day ladies.

Watson...that's a funny visual of you running out yelling "Ozzie". Bet you look good as Sharon Wig wearing went well. No loose hair here yet either! The only problem I had was that it began "creeping" a bit in the afternoon...don't know if I need to make it tighter or looser or it will be different when my hair is gone. Any ideas or suggestions? One thing that was pretty funny is that my husband (my office is a client of his for computer work) came in to fix a computer...he didn't notice at first He left earlier than I did this AM and didn't know I planned to wear it.

Hope everyone is doing okay today!

Liz

Rebecca...somehow I didn't see your post earlier. Really sorry to hear things didn't go well. It will probably be good to go over the anti nausea meds with your doctor to see what can make it easier next time.

Kim...half way through and no rads...that is great news!

Hope all of you feel better soon and get some rest.

Liz

Rebecca, I hope you are feeling better now. My first session was a doozy too. I know how you feel. What you MUST do is write down everything they gave you - or ask what it was when you go for your blood counts. If they gave you Aloxi first ask for Emmend. If they put Zofran in the drip and told you to take that at home ask to switch to Kytril. Also- make sure you are on the 4-6 hour dosing at home instead of the 12 hour dosing. That way you have a more concentrated amount in your system at all times.

Between the dosing of the Kytril/Zofran/etc. TAKE THE COMPAZINE.

And you must EAT. If your stomach gets empty you will feel worse. If they have you taking the Decadron at home that in itself can make you sick if you take it on an empty stomach.

Chemo doesn't have to be like your first one. You just need the right med cocktail and do not take "Well let's try it again one more time" for an answer. You want a CHANGE for the next one.

Good luck Sweetie- It WILL get better and it WILL be overwith.