Starting Chemo in June 2005

Rene23

Oh, Dana.. I'm so sorry. Six days is a long time to feel like crap. Hopefully the worst of it is behind you now.

Analemma

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.

JoMac

Dana and Scout I was sailing along doing pretty well and then this afternoon. Bang.....I fell asleep for over two hours and feel like I had tomorrows treatment already.
Wow. I don't know if this is because I am nervous about tomorrow or if I was doing too much or just nothing other than the fatigue that can come and go.
It is hard to remember that my body is really running a "healing marathon" everyday.
All that exhertion has to add up from time to time.
Oh well....I'm going tomorrow no matter what . I am getting some things together tonight.
My mother will be coming for a long visit on Thurs. She hasn't seen me since the surgery phase was over.
I read some of my breast cancer books this afternoon.
Now I am convinced my cancer is a better stage than I thought it was. But as No Surrender says......I have to let that go.

LizFL

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

I still have a bad cold, the kids and hubby are cranky, so it's going to be a long evening! I did feel good enough to make homemade mac and chees and hubby is grilling a steak, so that should make me feel better.
I saw the surgeon (nodes) and she said everthing was fine. I also talked to the oncologist and basically there's not much to be done for the fatigue except ride through it...yuck!
The oncologist took out my port stitches and I called the surgeon (who put it in) and now I don't have to go out in the 100 degree weather tomorrow..yea! And no dr's appt for 2 days..yea!

LizFL

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

nosurrender

Now hear this! A message from Towanda...

YOU ARE IN CHEMO! This is the ONE TIME you can baby yourselves- ask husbands and family members to be at your beck and call and get away with it completely- give your bosses the fear of kharma if they aren't more understanding and YOU DON'T HAVE TO FEEL THE LEAST BIT GUILTY!

SO:
From now on - OTHER people buy the groceries on chemo day. If you are caught mowing your lawn on day 1, 2 or 3 of chemo day you will get a visit from the Towanda squad.
Feeling tired? LIE DOWN! Tell whoever that you have to go and sleep and they can split the atom without you that day....
In other words... what are you girls thinking??!

I know you are trying to keep your lives as normal as possible but for pete's sake! Take it easy!

Chemo is CUMULATIVE which means with each infusion you will get MORE tired. If you let yourselves get run down then you will be stressing your already compromised immune system and that is NOT good.

I want you ALL to be CHEMO PRINCESSES. I know it will be hard to sit still... I think this group of June bugs has a serious case of ants in their pants...But Try. Please???

Now- back to our regular programming...
Dana I want you to call your doc and tell him you have felt this bad for this long. This is not normal and you may need a change of meds. Some people have a type of deficiency that makes certain types of chemo more toxic to thier bodies than others. I happen to be one of them so I know that 6 days of hell is not normal. So please tell them.

The Chemo # 3 let down.... I don't know about that. I felt that way after EACH chemo! But if you are on a 4 cycle chemo and you are at #3 you could be feeling a strange fear that you don't want to stop at #4 because you won't be actively fighting the disease anymore. Many girls get nervous around the time of the end of chemo. But let not your hearts be troubled! You have RADIATION!!! And that is just oodles of fun to look forward too! And by the time you are done going to THAT everyday for 5 weeks you will be SO HAPPY you are done with this crap you will be doing cartwheels!

The Hair question:
Some hair DOES stay on the head... It looks like what my poor Barbies looked like after my brother's got through with them. A long strand in a couple of spots and nothing in others. Your head will tell you what to do. You may be so uncomfortable you will be happy to have it all off. But I really never heard of anyone keeping ALL their hair on A/C or FEC. CMF DOES keep most of the hair on some people. But not the others.

Your stage and prognosis.... FORGET THEM. You are YOU - right Jo? The stats are as old as the hills and as inaccurate as hell. You all are hitting this with the best medicine available. Trust THAT and what you are doing before you read some stat from 20 years ago before they had half these meds.

Chest lymphadema is a real thing- and I get it too. But my docs always make sure to rule out an infection first. I am actually bigger in my "bad Boob" than in the good one. And it has more potholes than the Long Island Expressway!

All in all I am in Awe of you girls.
I am jealous that you all seem to be able to run a 10K run after your infusions- I was a slug after mine! BUT remember that there could be serious consequences if you do too much- one being having to DELAY the rest of your chemo while your body rests... and you want this over with!

Oh and the fatigue- make SURE you are getting enough protien in your diet. But if you are THAT tired tell your doc and he will check you over so there isn't anything wrong like a lingering virus or infection that you picked up

SO carry on! Salley Forth! YOU ARE GETTING IT DONE! (and then some!)

Big hugs and a can of Raid for that ant problem.......

LizFL

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

NancyM

Liz - thanks so much for the cute poem! I really needed that as I'm going in for Chemo 2 this morning.

rmmom

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

JoMac

NOt a spoiler!
I am back from chemo number three and it couldn't have gone better. I ate a lot before and drank water, also used the LMX cream so there was no port pain at all.
Because of last time they treated me great. It was so easy. I even fell asleep for a short time. Now I won't have to worry about number 4 . I feel a huge burden off my back. Maybe I can do this thing.
Now I am going to crawl into bed and get ready for the after chemo effects.
All the suggestions on this board got me through this one and gave me a plan for more to come.
huge thanks you's .

Watson

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

Scout

Watson, I think you and I must have started Chemo on the same day! It's been a week as of today and my second one will be July 14.
I'm still at the bottom of the ocean, although today was better than yesterday....yea!
My DH has been very supportive, but he has his momments too....and I understand the stress he is under.
I see the psychiatrist tomorrow morning...they finally have an opening...so I hope to address some issues and hopefull start on some antidepressants....it can only help with this stress!

kimBe

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

Analemma

Jo, I'm so glad #3 went well for you - I was worried about you! As for me, if this is my regular pattern, Wednesday will definitely be my "bad day". Maybe it's the steroids, but both times I felt great on Tuesday after chemo on Monday, then washed up on Wednesday. whoever said "walking on the bottom of the ocean" really got it right. Not really sick-sick, just heavy, sluggish, tired, and in a fog.
And the hair! How long did it take for it all to come out, those of you who have lost it? Mine started Sunday eve, and I've been losing it by handsful, and it still looks like I've got a normal head of hair. I can tell it's much thinner, but I thought it only took a couple of days? I thought I would buzz it, but now I can't bring myself to do it. It's really short, anyway. I guess I'm hoping I will keep a strand or two somewhere.

Nancy, so sorry you have to deal with domestic issues right now - like any of us needs the additional stress, right? I'm sure it's hard for all of our DH's to put their own feelings aside to be supportive of us now when we need it so much. Mine is doing great so far, but there have been times in our past when he just wasn't there for me when I needed him to be. Good luck.

I totally was nonproductive today, so I hope to make some pots tomorrow. I have another show the weekend of the 9-10, and another one the weekend after that. That one will be a chemo week, hopefully I can do it. DH has been great to go with me - last year I did them by myself and it was hard.

LizFL

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

kimBe

Liz-I had my surgery May 2. In some ways it seems so long ago, and in others like it was yesterday. My "hair loss" lasted about 4 days before Jim cut it off-then I lost stubble for about another 4 days-have just left it as now I am thinking that I probably would have had enough left to "punt". What I do have left though is platnum blonde-actually it is very grey but oh well.
My poor hubby really caught it the other night-and he just kept saying-I'm not even going there-this emotion thing is NOT you, I read where this was a side effect and you need to talk to your doctor and tell him that you are emotional and worrying about things that you would have shrugged off in the past. I was looking for sympathy and he just wasn't interested. Needless to say I can look back a day ago and realize that I was not acting anywhere close to me and that his response was the best....but sure didn't see that at the time.
Good luck the rest of the week and have a fantastic weekend!
KimB

nosurrender

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!"

kimBe

No Surrender! YOU ARE THE GREATEST! Thank you for everything!
KimB

Rene23

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.

LizFL

Quote:

---

No Surrender! YOU ARE THE GREATEST! Thank you for everything!
KimB

---

I totally agree! We are very lucky ladies to have you here helping us!

Rene...I knew I left off some names in yesterday's post, but was too lazy to go back through the thread to look!

Liz

Liz

Fi_in_oz

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

LizFL

Kimbe...forgot to add...had my surgery 5/1.

Fi...I'm taking before and after photos too!

Decided to test drive one of my wigs by wearing it to work today. Figure it will be easier to deal with co-workers reactions while I still have hair. I must say it certainly took less time to get ready this AM...that's why I have time to post again before I leave

No Surrender has advised me that I need to name my wigs. Today I am wearing Attila! The once I got at the Look Good Feel Better meeting came with a name...Revenge!
The third one is my secret agent wig...I call it Semper Fi...but it's real name is Fiona (just a name I have always liked). Fi...wondering if that is your name?

So ladies...are you naming your wigs?

Liz

Watson

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.

RebeccaH

I had my first A/C treatment on Tuesday. I only hope the aftermath is better with the next treatments. I ended up worshipping the porclein gods throughout the night. When I went in for my nuelasta shot, they sent back to the infusion room for fluids and more anti-nausea drugs. I think I finally have a hold on the drugs. At least I've stopped puking!

It's official...cancer really sucks. But, I'm not going to let the first treatment win. Although, I decided I better go ahead and schedule the rest of my treatments. It's hard knowing you feel like crap and you have to do this all over again.

I don't remember reading about getting the steroids that felt like 'ants in your pants.' Very weird feeling....

I'm glad I can always come back here for encouragement. Thanks for being here!

Rebecca

LizFL

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

kimBe

Just got back from #3. Went well-fewer "sensations" than the previous two and think even less nausea. Took Ativan and Compazine last night then an Ativan this morning. I did ask and at this time I am not planned to have any radiation. Am half way through the AC! Need to take a nap so will talk to you tomorrow.
KimB

LizFL

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

Watson

Rebecca,
I'm so sorry you're having a bad time. Hopefully they'll get your meds right and you won't have to go through that again. Yes, cancer does suck.
Kim,
I"m soooooo jealous! I've only got one a/c under my belt. Seven more plus rads for me. You go girl.

Okay,
I haven't had any hair loss yet, but I took my wig for a "test drive" at the grocery store. No one gave me a second glance! I guess that means it passes for the real deal. I decided to wear the wig around people who don't know me because everyone who does know me seems a little shocked or something when they see it for the first time.

I wear a wireless ear piece for my cell phone a lot. You know one of those Bluetooth gadgets that just rests on your ear. I thought today how funny that will look when I"m bald. Some sort of cyborg or something.
Oh well!

nosurrender

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.