Anyone Starting Chemo Jan. 2010?

To those ladies who are dealing with family/friends who are not supportive I am saddened for you that during this incredibly difficult time you have to deal with all of this other crap as well. This is your life and you have a right to fight for it however you feel is the best for you and your family. You are incredibly strong, intelligent women who have determination to face these fears and cancer head on and kick it in the a$$ so hold your heads high and feel confident in who you are and what you decide. I think that when people let us down or aren't there for us as we need them to be, God blesses us with other people in our lives to give us the strength and support we need. Those people, whether aquaintenances, dear friends, colleagues, or family are gifts to us during this time and we will be someone else's gift when they need it. Overall I feel incredibly blessed by the support surrounding myself and our family and am continually suprised by the people who have gone out of their way to help our family. However along with some of you, I am saddened by some of my family members who seem to either "forget" or choose not to ask in-depth quesions about how I am really doing. I often think that my dad forgets that his daughter is going through chemo and could really use a phone call just to say "I love you" instead of the obligatory phone call after chemo to see how I am but not really want to hear what I am truly going through. My mom, on the other hand, has made it a point everytime we get off the phone to tell me she loves me which is not something my family says often. I guess everyone has their way of dealing with cancer but I agree that I wish people would remember it is not about them or their previous experiences right now.

It sounds like some of us are having another hard week emotionally and that a "pity party" might be necessary. Let's face it, we are all human and have moments that lift us up and then those that slam us right back down to the ground. We will all get back up, when we are ready. Everytime I read this board I am reminded that I am not doing this alone and that there are wonderful women whose lives are being flipped upside down like mine and that one day(very soon) we will be looking back at cancer and knowing that we beat it...it didn't beat us. Hugs to all of you amazing women:)

I'm all for a good ole pity party.  I am sooooooo tired of feeling like crap.  They said maybe I can go home tomorrow, but I've been coughing constantly for past 2 days and temp is up a little again tonight so won't hold my breath (not that I could hold my breath at this point).   

I know that some of you are having a difficult time over the past few weeks.  I am definately turning the corner on my cold and chemo side effects.  I also wanted to let you know that tonight I got a chance to see life on the other side of treatments and surgeries.  I met 8 other breast cancer survivors for dinner in downtown Seattle.  They are women I met on the "Crazy Sexy Seattle" Forum.  Some were a couple of years out, one just finished DIEP recon, one finished chemo this summer and had her exchange surgery 2 weeks ago.  There were 3 of us who were in the middle of chemo.  Several had very short hair but looked like they had had that hair forever.  When things get tough and/or discouraging, I will think of their faces and that I will be there too some day.

Youngmom - I think you said it eloquently when you said "I think that when people let us down or aren't there for us as we need them to be, God blesses us with other people in our lives to give us the strength and support we need.'  Though many people have disappointed us, there are many who also surprised us with their support and generosity.  I know it is hard when it is family or a really close friend that we should be able to count.

Paxton - I love your added animation.  I hope you turn the corner as well and are able to get out of the hospital tomorrow!  It has been an incredibly difficult journey for you.

mslrg and 11tybillion- I'm sorry that your family and your friends aren't supporting you the way you need them to.  It is a shame, because now is the moment when you need unconditional love and support the most.  The irony is that the ones who should find it easy to give that love and support are the ones who can't seem to manage it, while complete strangers rise up to the occasion and give us the strength and love we need. 

My mother is so used to the world revolving around her neuroses and her wants that this cancer thing has been hard for her to take.  After telling her about my diagnosis, she kept saying how weird it was because she always thought she'd be the one with breast cancer.  No reason why, just because.  She's supportive in her own dysfunctional way.  She came in town last weekend, and despite staying at our house, she didn't lift a finger to help with the kids.  She was too exhausted and emotionally spent from the wedding she was in town to attend.  Thank goodness my sister drove in from Asheville to help.  She came without her kids and spent the weekend playing with my kids, taking them to eat, buying them toys, and keeping them out of my hair.  What a gift!! 

Now, when it comes to asking for help, this is the hard part.  I've been in chemo for two months now and so far managed pretty well.  It's time to call in the troops, though, and I'm not sure how to do it.  All those folks that said "let me know if there's anything I can do to help!" are needed now.  How do I do it?  Do I cry "Uncle" and see who shows up?  Do I make a list of things I need and send that out?  It's so much easier when a friend calls and says they're coming round with dinner and then shows up.  Lesson learned---how to help a friend in need...show up!!!  Don't just ask what can be done, show up and find something to do. 

I'm going to have to look for a real live support group around here at some point, so that I can meet people who have lived through this journey and are on the other side of it.  I had my echo yesterday to see what the damage to my heart is after the AC.  Since my scare in January, I'm terrified of the cardiologist.   I'll know more on Monday. 

Paxton- you are in my thoughts today.  I hope you get good news and get a chance to go home.  Hopefully, being in the hospital has given you the chance to rest and recuperate.  I know you are eager to get home an be with your little one. 

Georgiabirdgirl- As far as asking for help ask that one really close friend to do the asking for you.  We desparately needed help with the kids and meals and rides getting the kids to sports, etc.  I called upon a few close friends to get the word out.  One set up meals through a website called foodtidings.com.  All I had to do was give her the emails of my friends (that I had emails for) and she sent it out.  She put a note on there about  forwarding it to other.  It was great, we had meals from the night before surgery all the way through - it ended up being about 30+ meals.  And many of the meals we ate half and ended up freezing the rest as there was no time to eat leftovers, because the next night another meal was on the way.  I handled it the same way with rides for the kids.  I basically set up a SherCare plan with what I needed help with and gave it to my core people and then they passed it out to those who offered help. 

As far as people helping it is there way to feel useful in a situation that they aren't able to do anything to make your cancer go away.  It makes them feel good and truly what's wrong with that.  B/4 cancer I wanted to make people feel good, why should that change now that I have cancer?

Paxton, so sorry that you have more on your plate... sending positive MN vibes your way!!

Just-Sher

mslrg sorry for all you have been going through with everything.  So how's that colonoscopy prep going?   I am the queen of colonoscopys.  This past Dec made my 14th in 7 years.  I suffer from such bad diarrhea that I always joke that I could go for a colonoscopy at a moments notice.    The prep is the only hard part, the colonoscopy is nothing.  You are unconsious. (tee hee)   That is the best part.  I look forward to the Diprovan.  I can see why Michael Jackson liked it so much.  Hope it turns out to be nothing more than an internal hemroid.

At the same time I was diagnosed with the BC, I was diagnosed with a basal cell carcinoma on my cheek.  I had to put that on the back burner until I finished chemo.  I would just shake my head when people would say "oh it's only basal cell, that's nothing."  Yeah well maybe it's nothing to some people but to somone who just got a BC diagnosis 3 weeks before, IT'S A BIG DEAL.

I digress.  I went today to have it taken care of.  I had that Mohs Microsurgery done since the cancer was in a prominent place on my left cheek right under my eye.  I had to go over my extensive medical history with the nurses.  The doc comes in and is looking over the medical history and he goes "you look really healthy."  I'm thinkin', did he read that?  I looked like shit because I couldn't put on any make up except eyebrows and mascara.  Then the dumb wig plopped on my head.  And I'm letting this man do surgery on me?  I got concerned I had forgotten to take a Xanax.

He numbed up my cheek with about 50 shots of Lidocaine.  He took his sample and off I went to the waiting room.  It was surgery day, so there were others out there waiting too.  We were all color coded - I was yellow.  After about 45 mins I went back in and they told me I was done, they got it all.  They gave me a lesson in how to take care of the wound.  They gave me a telfa pad and polysporin and told me to keep that on with some paper tape, not a bandaid or any latex.  I said, where do I get the paper tape?  The nurse goes "we SELL it at the front desk".  I just started laughing to myself.  What a rip off.  They give you the 2/3's and make you buy the last part.  It was 3 bucks for a stupid little roll that cost them about 10 cents.

I was going to stop at Michaels but after getting a look at myself with this gigantic pressure bandage over the wound, I decided I better not.     I was hungry so decided to stop at a chinese place for take out.  I went in wearing my sun glasses trying desperately to hide the huge bandage protruding from my face.  It was so dark in there I had trouble reading the menu, but refused to take the glasses off.

I decided I better take a vacation day from work tomorrow.  I cannot shower or wash my face or take this hideous bandage off until Friday.  It is supposed to be nice again tomorrow so I will enjoy the day.  The past 2 days since the temps have been in the low 60's I've been trying to get out and walk the dog.  Wow, I was winded after about 1/4 mile.  I pushed myself to do just a little over a mile.  I did the same today.  I can't believe how out of shape I am.  I used to be able to walk 2 miles pretty quickly, no problem, but I felt like I was 100 walking now.

Paxton sorry you are in the hosp.  Hope you will be home with that little darling of yours real soon.  Love the animation.  Keep it up.

Georgiabirdgirl--I too had the hardest time asking for help. It is somuch easier/nicer, when someone just calls to say they're bringing dinner. I put out  a call for help on my carepages and  a couple of people came through.My son's friend's mom made us dinner twice, and a perfect stranger made dinner once. I've had 4 meals done since my surgery in October. My DH's work gave us a very generous gift card to our grocery store, where they have a deli and hot wok. My job gave me gift cards to restaurants and that was very helpful. The next time someone asks if there's anything they can do, I will ask for meals or for them to take the kids for a couple of hours--even if I feel OK because ANY break is a welcome reprieve right now. Needless to say, my BF who lives a mile away from me has NEVER brought food, just some moldy oranges because I asked her if I couold have some for her tree. They had clearly been picked up off the ground around the tree,not picked and definitely not sorted for rotten ones. Good luck on getting help. I sent out gushing thank you notes for the help I had. I want them to now how much I appreciate it.

As for the colonoscopy prep. OMG!!! No food since last night. I gardened all day to take my mind off the starvation. I just began gagging down the disgusting stuff and it hasn't started to work yet. It tastes absolutely vile!

Georgiabirdgirl--sorry about your mom. Seems like many of us have mom stuff to deal with.

Vegasdiva--Yikes! ope you feel  better. 2 cancers at once is a HUGE deal for crying out loud. 14 colonoscopies! CAn I say, "Holy sh*t"?

Stilcardsfan-- glad your mass is shrinking. That's brilliant news!

Paxton--hope you go out of the hospital today.

OK- well I asked a friend to pass the word that I could use some help in the next few weeks.  It was a little akward for me, but she said she'd mobilize the troops and we'd get some help in no time.  It's much easier to just tell one person and then let them organize it.  Thanks for the advice.

Tamatar- I am almost a week out from my first Taxol and so far I will say that it's much kinder to me than the AC was.  I still was fatigued and have some stomach upset, but not too bad.  I put in two full days of work on Monday and Tuesday.  But, I have been having a lot of pain that seems to be nerve pain.  It's not exactly muscle spasm, but feels more like lightning bolts.  Hot baths seem to help a lot.  I've basically been stewing myself for the past few days.  I left work early yesterday because I just kept needing to soak my bones. Then, I decided to stay home today too.  I read that Vitamin B might help, so I started taking that today too.  I'm going to see the doc tomorrow so if it's still aggravating me I'll ask him then what to do about it.  The truth is that I'll take this pain over the "mack truck" days I had with AC anyday. 

Tamatar,

I get  canker sores on the second week after each treatment. I use lanolin (the one that breasfeeding mothers put on their nipples, mine is Medela's PureLan 100) and find that it helps! It both heals and soothes, and makes it possible to open my mouth.   

Okay, sisters, I know I'm in the right place for support. I got so engrossed reading all of your posts that I actually considered taking my laptop into the bathroom and typing while seated on the "throne". It's so good to know that I'm not alone.

 I"m recovering now from #4 of 6 TCH. I'd swear that the bone aches are worse this time. I"m not really nauseous, but food hurts as it goes down as if my whole esophagus is lined with needles.

As far as getting help goes, I am constantly surprised at how those who know me the least are the ones that I can really count on.

Hang in there everyone. As my grandma used to say, "Girl, I got to make it!"

Well ladies it has been a week since my last TCH and I am still feeling very tired, weak and nauseaus(which is a new one for me). Not happy that I am still feeling this way and am praying that it goes away soon so I can at least enjoy the 2 weeks I am counting on before the next round. I finally went to work today and it felt good to get out of the house and be around people and feel a little more like myself.Having all of my college girlfriends over tomorrow night and am so looking forward to it but am hoping I feel better. Don't think I am going to be up to even having 1 glass of wine:( 

Paxton: Tears sprang to my eyes when I read your post. I am so glad you are home from the hospital but know that you have been through so much crap already. I'm sad about you being too weak to hold the baby. It is the worst feeling and in those moments I know I just wanted to break down. This past weekend I was so sick I couldn't take care of my daughter and everytime I looked at her I got so sad and cried. Tonight was the first time in a week that I was alone with all 3 kids taking care of them like a mommy. I gave the baby a bath and just hugged her so tight and told her how much I missed her this week. I know it feels like you will feel like this forever but you won't and that is a good thing b/c it really sucks. I have a friend who tells me to tell myself that this time next week I won't feel like this and in some of my darkest moments that phrase gives me a glimmer of light. I wish you the best and pray that you feel better very soon.

Tamtar: ask your onc for magic mouthwash. I only had the cold sores after 1 tx so far but after using that stuff for 1 1/2 days my mouth was back to normal.

Michelle_nj:  for the restless legs, see if your onc can prescribe ativan to settle you down a little. i also take zinc but who knows if it really helps.

Vegasdiva: so sorry to hear you are having to deal with more stuff right now. I hope everything heals quickly.

rcames: sorry to hear about the aches and pains.  do you get the Neulasta shot? if so the pains might be from that too.

georgiabirdgirl: glad to hear you are calling in the troops for help and hopefully they arrive asap with lots of help and food. I am with you on the mom issues as well. My mom also thought she should have been the one to get it and to be honest that woman has tortured her body(smoking, drinking, prescription pills, extreme dieting) for the past 40 years and yet here I sit with BC. Go figure. Also the kind of person who makes everything to be about her. Very frustrating but I have grown quite accustomed to this behavior so it is now just expected. My mom is here 1 day a week to watch the baby and she never offers to do anything around the house(a load of laundry, start a dinner, run to the store) knowing full well how crazy life is for us right now. instead she does her grandmotherly "duty" and watches the baby and takes a NAP when the baby naps. Are you kidding me?! Thankfully my mother-in-law is a saint and on the days she is here she is always offering to do stuff for us but I feel bad having her do too much so she helps with the laundry which is a huge help. guess I at least got one good one.

mslrg:  the anesthesia didn't work??!!!????  Why in the world would they continue with the colonoscopy if you weren't out?  Do you know what they gave you?  Was it Verset?  That stuff is shit.  Diprovan is the anesthetic of choice for this procedure.   They didn't find any internal hemroids?

paxton: So glad to hear you are out of the hospital.  Sorry you are still feeling like shit.  I know what that is like.  It is a feeling you want to pass quickly.  At least you can see that precious baby of yours now.

I got to take the pressure bandage off my face this morning.  I still had to put another bandage on, but at least this one is about 1/10 the size of the last one.  The only good thing is that it doesn't hurt.

Tonight I am meeting with my scrapbooking friends for a farewell dinner for one of our members.  She is moving to Phoenix next month.  I am really looking forward to getting out and seeing friends.  It has been a long time since I have gone out to have fun!

Hope everyone has a SE free day!!

PAGOWENS: loved,loved, loved your post! Full of much wisdom and insight! Yes, we've all had quite the week, and you're absolutely correct about learning what people really are like. I also agree with this being a physical, emotional, and spiritual journey. People who are not going through this seem to only recognize the physical side, and some of them have had very hard time fathoming how hard we have it. My BF keeps comparing me toother people she's known  with breast cacner. "Well, Carol wasn't as sick as you. She was back to work in a month, kept her hair, and is still fine 2 yars later. Well, Jeanine never had to go get what you had done. " (Note, Carol had DCIS--a lumpectomy ,no rads and no chemo, and Jeanie refused treatment and is now dead--hardly good comparisons).  But what if these same people were being confronted with their mortality, femininity, role as mother or employee? What if they were suddenly losing income because they couldn't work? What if they were being bombarded with new information all at once and being forced to make life-changing decisions all at once? What if" what if? what if? Could they manage this with anymore grace or finesse? I doubt it. I was talking about this to my SIL a couple of nights ago an she said that anyone who distances themselves at a time like this probably has their own fears of getting cancer or some psychological issue that has nothing to do with us. Too bad, their loss, not ours, bt we still have to grieve what we thought we had in a friend or a relative and that's never easy at a time like this.

Vegas Diva--yes, they used fentanol and versed, and it might just as well havebeen Kool Aid! During the procedure, at least. Once they were all done and I was in recovery, all I wanted to do was sleep and had to be woken up 3 times.

The other thing that really frosted my biscuits is that they had to do an IV in my hand. No one in the place was certified to access my Power Port. I went into surgery back in January, under general anaesthesia, and let someone ut into my jugular veinnto put this sucker in. It's been uncomfortable at best, and I'm always aware of it. I saw the bills for having it done. The surgeon, anaesthesiologist and the hospital made $57,000.00 between them for that gig, but I have only had the benefit of my port being used twice--for 2 infusions. Every blood draw, and yesterday's IV ( we're talking at least 7 times my veins have been accessed) has been in the arm, hand, or wrist because people are not certified to access it. So was I subjected to another surgery so that others could make a buck? WTF? Getting the IV yesterday was so painful b/c chemo trashes your veins and I had bad veins before chemo. A really nice guy was called in to do my IV and it was so painful, even though he was great and just as sweet as he could be. But by the time he got finished, my blood was on me, the gueney, the floor, and his scrub pants! He said he can access aPower Port,but that surgery center doesn't have a "protocol" for it. The nurses all had a discussion about how they really should do it. I am going to write a letter to the head administrator about it

mslrg: Sorry to hear about the troubles with blood draws and IV's.  Do you live in a rural area that they don't have someone qualified to access your port?  I live in a very rural area and run into that sometimes.  I've never had a problem during my chemo or hospital stays.  Mostly just when I need a blood draw for something which is fine by me.  I haven't gotten good blood return with the port for quite awhile now so I don't even bother trying for blood draws.  But even when I did get blood return, I always hated having them draw from my port.  It makes me queasy.  I'm ok with stuff going in and really like it for chemo. 

BF gave me the bedroom to myself and took up in the spare room while I'm sick.  I stayed up late reading Eat, Pray, Love.  I'm almost done so that was actually enjoyeable.  BF got up with the baby.  I'm just so thankful he's home to take care of the him.  He's really stepped up.

Hi Everyone,

Thank you for the tips on magic mouthwash and cold sores...I will ask my onc.

I have read all of your posts about family and friends that are just not there for us.  It really hit home!  I thought that i was just being pissy about my family members that insist that they will "be there" and are happy to help at any time but when I ask...and it has only been a couple of times...the response is that they have to "check" to see if they are available...And mind you that when I ask them to watch the kids I stock the entire house with food and treats that they most definately take advantage of!!!!   I really felt better when you write about how this has always been about them and not about me...well tough shit for them...it is aboout me and if they don't like it then they can stay away.  Now that doesn't bother me as much to say.

Now that I have that off my chest, I have to reave about my wonderful Brother and Sister in law.  My BIL came over the other day and fixed my heat when my husband was at work..he was wonderful!  And his wife...my SIL is always lending a kind word and thought and always asks how I am...they are the best!!!

Sorry about the rant...but now I fell much better...you all have really helped now that I know that it is not just me.

Hang in there everyone and have a great SE free weekend...be sure to spend time with those that YOU enjoy.

Tammy