Starting Chemo in April 2014

SharonDe

Greetings, all.  Thanks for the reminder on exercise classes - I believe we have a place that offers them for cancer patients.

Had a visit from a good friend we haven't seen in years - she came by last night and I managed to stay sitting up for 5 hours!  That's an accomplishment given the fatigue I've had.  Starting pre-chemo steroids today for my last infusion on Thursday.  

LovebeingNana

MomMom my acupuncturist told me when I have that kind of pain it is because there is a problem in the area the are treating. 

EverForward

Round four today. Anyone else in the chair today?

My "chemo guru" (a cancer survivor the hospital paired me up with) is coming by later with lunch for a chemo picnic.

And there's the Benadryl. So I will drift off now.

LovebeingNana

Go get 'em Everforward!!! Enjoy your picnic! (And your nap

clarrn

I'll be in the chair at 1pm too!  Taxol #4.  Feeling pretty great today  And my MIL is coming over to clean my house while I am in chemo.  BONUS!  Of course I am frantically pre-cleaning...lol.. the dust bunnies are taking over! Step MIL is taking me, we are closer to the same age and she brings all the trashy celeb magazines that I never buy but are oh so entertaining!  Always a good time on benadryl

Hope your chemo guru picnic was encouraging Everforward!

EverForward

She really knows how to throw a chemo picnic! Here is the appetizer course.

SharonDe

Wow!!!  Looks like quite a party, Everforward.

Footballnut

hi all!

I've just caught up on the thread - wow so much activity! Today I found out that I am negative for the mutated BRCA 1 and 2 gene.

I also found out that my mothers "down there" cancer was uterine. So I called her to give her the news.

:-)

Next wed is my 4 th round of chemo. Taxotere. I am ao nervous about SEs although I know some women that breezed through it. I knew what to expect with FEC and feel like I have to start all over again

Any advice would be most helpful

Have a great day!!

ColdInCanada

Happy Wednesday Ladies! To those who are in the chair today, I wish you minimal SEs!

Mompv - Homeschooling is one of the best decisions we ever made. And we sort of fell into by accident.  Once we got started though, we never looked back. We learn together as a family, and get so much quality time. And NOW, having to worry about germs and viruses, etc, it is just so much easier than having to send them off to school every day.

Well, it's Round 5 for me on Friday. Blah. I KNOW it's my second last round. And I KNOW that a week from today I will have crawled out of the Dark Place for the second last time. But I. DON'T. WANNA. I really, really, really, REALLY do NOT want to do this again. The mental temper tantrum is taking over, complete with curse words and kicking and screaming and fist pounding. *SIGH* 

I envy all you ladies who are able to exercise so diligently through this. The chemo is doing a number on my leg muscles - every day I wake up feeling like I've run a marathon the day before. I'm so STIFF and SORE and stretching said muscles almost brings me to tears. All I can manage is a walk. Sometimes only every second day. A slow, shuffling walk. Like people with walkers pass me. I miss being strong and fit and being able to walk up the stairs without stopping to catch my breath. Also I miss FITTING INTO MY PANTS. 

And that's today's whining. Thanks for tuning in.

Does anyone else notice the Pity Looks when you go out in public with just a scarf (or sans headgear - though I haven't been so brave yet)? I mean, REALLY, I like a good Pity Party as much as the next chemo patient, but do we need to go there even when it's OBVIOUS I'm having a good day, smiling and shopping and hanging out with the kids or friends or even solo?  Like, HIGH FIVE me or telling me I'm ROCKING THE SCARF, but leave the SAD EYES at home. They're annoying, and they make me want to punch you in the throat. 

And NOW, you all have gotten to see my violent side. 

I've taken photos of the children delicately holding the butterflies on their fingers and I can't wait to show my MO the JOY he brought into our household by allowing the caterpillars. And I confess they have done wonderful things for me too. No matter how awful I feel, no matter the anxiety or the pain, every time I walk by that butterfly cage I am reminded that the BEAUTY in the world far surpasses the UGLY.

Have a wonderful day Warriors! Hugs to you all!

LovebeingNana

Cold - I want to do some throat punching too!!!! I just got back from the grocery store and seriously....CAN NOT TAKE IT!!! I am so grateful for the people who intentionally look me in the eye and say hello even just smile!!!! 

clarrn

Yep, those pity eyes get to me too.  I went from the backyard to my front walk with my daughter on her bike yesterday and didn't realize that I wasn't in my hair.     One of my chattiest neighbors on his front porch gave the the eyes,  didn't say a word.   And after that awkward pity stare,  just walked inside.   I thought maybe he didn't recognize me but,  he knows my daughter well too.  And she looks the same.  Lol.  Just shocked maybe?  Nothing he can't fix with a plate of cinnamon buns.   Maybe now that he knows I can get some treats to go with the pity.  But still a hello goes a long way

mmtagirl

Mommom, yes, there were times when some needles pinched going in while others I couldn't feel.  It changed each time.  Once gently inserted I was fine.  Don't want to scare anyone....the pain at insertion is no worse than an awkward phlebotomist during weekly bloodwork. Lol!

jhodro

Cold & Nana: Yep. I get it. Those looks from the people at my son's school. At the grocery.  I don't like wearing the wig (HOT), now I only wear it when I go to work or out to dinner. I HATE those sad looks. I'm convinced it has nothing to do with us. It's actually FEAR. I got this at work today: "You look really well…" in a surprised voice. So you haven't seen me in 10 weeks. You know I have cancer. Couldn't you just say - it's nice to have you back. The weather is great - - WHATEVER - - you look really well, pffft. Because, no, I don't look WELL. I have a wig (everyone knows, small office), I've gained weight, my skin looks - well- not good, I have these giant circles under my eyes, and drawn-on eyebrows. LOL. 

So - about the acupuncture - going out of town, on a cruise - would anyone trust that person, because it's offered? Or maybe I should just wait until I return? I am anxious to get it started before I have another date with the chair.

jhodro

Clarrn: I hope you get the best neighborly cookies ever after that! And I was in my car pulling out of the driveway this morning before realizing I forgot my hair. LOL. Had to go back in and throw the rug on.

Blueberry4

Uhhhh, the pity looks go hand in hand with punches in the throat for sure.  Like clarrn's neighbor, I have had people that I know really well from my daughter's karate class pretend they didn't know who I was when I showed up at an event in a scarf.  I think I still look like me, but even so I was with my daughter and she hasn't changed.  She's really noticeable too with blazing red hair.   I waved and said hi. They looked away, jerks. People really show you who they are in times of hardship, good and bad.  On the good side I have had some friends step up with meals and rides for my kids and just because presents far beyond anything I could have imagined.  They never look at me with pity either which is so awesome. 

I homeschool my two kids too, Cold, and love it.  Thank you so much for sharing the butterfly story.  How fun!  We raised ladybugs from larva one year and released them into the garden.  We had 12 I think, and my son named them all Jeffery.  What a good memory the Jefferies are.  He wants to start an ant farm now.  I have the equipment and just have to order the ants.  It's a completely self contained kit so hopefully we won't get ants everywhere.

Re going out without hair or scarf: We had a tornado watch last night and in my head I kept repeating, "grab a hat and get the kids" so I wouldn't forget if we had to rush for shelter.  (I mean my hat, not the kids, hopefully I wouldn't forget them)  What strange things we are forced to think of these days...

A wish for no pain and minimal SEs for us all...

mmtagirl

Jhondro, have you gotten the you look great and I love your hair comment at work yet?  Makes me think my real hair looked like s$it from all the positive wig comments.  Have to say, at least once a day I am in the stall with my hair off scratching my head for relief.  I am like you, wear it to work and minimally after that.  I live in a small town with a big global company headquarters so I can't go anywhere without knowing someone.  Getting used to it outside of work but at work if I wore a scarf I think I would lose the position leadership as a more senior leader.  Not ready to handle that yet.

I wear two wigs to work and tomorrow I am off to the wig bank for a new one.  I figure I might as well have fun with them and change it up if I have several more months of this.  

As for acupuncture, don't know if I could go to someone that at a minimum doesn't have a reputable refferal that I could count on.  

I live in Michigan, too. Pm me if you want to share where you live, and if close, I can share with you who I have used.

Enjoy your cruise!

jhodro

Mmtagirl: I totally have! I even got from this woman-girl (she still has the same high school hair cut down to practically her butt) saying "wigs are all the rage, you're going to love having one" Seriously? I can't.

And yes, I am in a very small office that is not temperature regulated (old building), and I go in our restroom a few times a day taking the wig off to let my head breathe. Don't get me wrong, I'm happy I have it, but it is so hot. Some of us need to get together and invent a ventilated wig system, like the cooled seats in cars. Flip a switch and an internal fan kicks on!!

MomMom

Pity looks...  I always wear my wig to church so I look completely normal (whatever that is:), and I've been on the prayer list for months. I've gotten some wonderful support there from a few,but I've also been ignored by some "stalwarts" of the church - I'm talking making eye contact and looking away like they didn't see me.  Makes me feel hurt and angry - and at church of all places. So I don't go all that often.

My wig is human hair, highlighted to look like my hair b4 chemo, so anyone not knowing about the cancer is surprised its a wig (happened to me yesterday). It has a vented base and I use a Velcro closing wig band so that helps with heat, but its still like going out with a hat on your head when its blazing hot & humid.  I wear little colored skull caps to the gym every day and to my classes there.  Everyone there knows my story and they've been AWESOME and nothing but supportive. I've never felt the least bit self conscious there and I see lots of people, some I don't know.

All you ladies facing issues are in my thoughts daily.  You are all amazing and strong.

Thanks for the feedback on the acupuncture.  I love it and feel I'm doing something positive and extremely relaxing for myself. I wanted to know about the little bit of pain on insertion last time because one friend who's had lots of experience with it told me there shouldn't ever be any pain if he is doing it correctly. I know he's good and he goes to China every year to see his family and train.  I'll. stop worry about that. Thank you!

SharonDe

Going in for my last treatment today.  I'm taking my Mom along as my chemo buddy.  She's been gone for ten years, passing from heart problems, after being a 25 year breast cancer survivor, having to deal with it in the days of radical mastectomies, severe lymphedema, peripheral neuropathy, and a dicey prognosis.  She toughed it out, worked every day through chemo and never complained.  I know she's been with me on this journey - love you, Mom.

Sunshine36

Sharon, absolutely beautiful picture of your momma! I agree, one tougj cookie (((hugs)))

And yes ladies,  the pity looks are the worst. They make me so uncomfortable, making me feel like I have to look away or avert my eyes, or be sorry that im making "them" uncomfortable just by my mere presence I wear my wig to work mostly, but weekends and runnjng errands I wear just hats or scarfs and I just feel embarrassed sometimes in public. I hate THE LOOK. 

So, I thought I was in the clear after the round 4 se's winded down,  but no on Monday my mouth sores began to appear, but this round, far worse than any previous round. Painful to talk or eat, evem drinking tiny sips caused me to wince.  The magic mouthwash is great, but only lasts about 15 mins or so for releif. In between,  I used orajel on the sores and it foes help, but now today, as the sores are healing, the inside of my mouth (gums and cheeks) feel like they just went 10 rounds with mike tyson, and my cheek is actually swollen on the right side (visibly swollen on the outside). Alittle bit of jaw pain too. Which completley scares the hell out of me. No fever at all (thankfully) and its not my teeth at all. Its my inner cheeks and gums were the sores and redness were ; (

Called the mo this mornjng and just waiting to hear back. Im just freaked out by the swelling and alittle emotionally beaten down as I thought I was in the clear after round 4, but this is by far the worst bout of mouth sores ive experienced  ; ( I did ice my mouth during infusion, but not as well as I should have I guess ; (

I won't complain any more as I know there are some experiencing far worse than me. 

Hugs to all

Jen 

Sunshine36

Sharon, absolutely beautiful picture of your momma! I agree, one tougj cookie (((hugs)))

And yes ladies,  the pity looks are the worst. They make me so uncomfortable, making me feel like I have to look away or avert my eyes, or be sorry that im making "them" uncomfortable just by my mere presence I wear my wig to work mostly, but weekends and runnjng errands I wear just hats or scarfs and I just feel embarrassed sometimes in public. I hate THE LOOK. 

So, I thought I was in the clear after the round 4 se's winded down,  but no on Monday my mouth sores began to appear, but this round, far worse than any previous round. Painful to talk or eat, evem drinking tiny sips caused me to wince.  The magic mouthwash is great, but only lasts about 15 mins or so for releif. In between,  I used orajel on the sores and it foes help, but now today, as the sores are healing, the inside of my mouth (gums and cheeks) feel like they just went 10 rounds with mike tyson, and my cheek is actually swollen on the right side (visibly swollen on the outside). Alittle bit of jaw pain too. Which completley scares the hell out of me. No fever at all (thankfully) and its not my teeth at all. Its my inner cheeks and gums were the sores and redness were ; (

Called the mo this mornjng and just waiting to hear back. Im just freaked out by the swelling and alittle emotionally beaten down as I thought I was in the clear after round 4, but this is by far the worst bout of mouth sores ive experienced  ; ( I did ice my mouth during infusion, but not as well as I should have I guess ; (

I won't complain any more as I know there are some experiencing far worse than me. 

Hugs to all

Jen 

Swissmiss

I am wondering what the pity looks are! Where I live no one, I mean no one, will make eye contact with me at all if I'm out and about with a hat or scarf.  Makes me feel invisible.  Honestly, I think pity just might be better than invisibility!  I didn't get a chance to get to know many people here in OK before I was diagnosed, and I think people have just shut me out.  At my daughters dance studio not one single mom would make eye contact with me, and since we were new this year, it was very lonely.  One of my younger sons friends moms has been great and offers to help out, but she is the only one.  It seems once my teenagers friends found out I had cancer, the parents of those kids just disappeared for me. No ride offers, no invites to get togethers, just completely ignored.  It has been a strange year, as I imagined folks offering to help.  I'm not sure what to make of the negativity, or rather, indifference.  Is it the culture down here, or have I not reached out appropriately?  

I had to laugh yesterday outside our local library.  I was wearing a scarf, walking out of the library, and the woman walking in with her young children looked at me like I was caring a bloodied chain saw rather than a stack of books...then she made a point to herd her children all the way to the other side of the walkway, so her kids were having to jump over shrubbery.  Did she think she and her kids would "catch" something from me?  I should be more worried than her!  So, clearly, this dark time of cancer treatment has been quite lonely for me.  I have tons of support flowing my way from Minnesota, but I wish I'd have some friendly faces here in Oklahoma too.  I'd even take pity...seriously! 

SharonDe...what a beautiful photo of your mother.  

Wishing you all a good day, loaded with sunshine and free of SE's

Footballnut

good morning all

I've once again been catching up and noticed your comments about pity looks

Ladies I've been stared at with everything from pity to disgust to eyes of awe as long as I can remember. This was due to how I was born. They'd look at me - then my arm and shake their head. 

To this day I still get looked at but I've learned not to care less. You don't like it - don't look. 

Since I've been dealing with this my whole life throwing my bald head into the equation doesn't seem like too big of a deal for me

Then again I don't often go out bald due to the sun and heat. I either wear my sports caps or wig. But when we were in Niagara on the lake a few weeks ago hubby and I found a nice shady spot where we sat on a bench under some trees and I sat bald. People walked by - some did double takes. I just laughed. I couldn't care less

Next wed I go for round 4 - my first of 3 rounds of taxotere. Hoping for the best. I'm just getting over my SEs from round 3 of FEC so bring it on

Unfortunately my hubby's employer has decided to be a dick and told him that he can't accompany me to chemo anymore. My hubby felt like garbage yesterday. Like he would let me down. He would still go if I wanted him too but he has enough pressure

His employer is the owner and a "friend" of his for the last 25 years. My hubby has worked there for the last 3 as a warehouse manager. It's a smaller company and they have been very good with him over the years. They just aren't polished. He was so upset 

So his cousin will go with me which should be fun. I told my hubby that I think that it's good that he gets a break. I can't imagine the emotions that he has been dealing with. He will be telling his employer that he must go to the appointments with my onc and that if I can't get anyone to go yo chemo with me he's still going

Fun stuff to have to deal with in the middle of all this!

The weather is getting so beautiful!  I hope that you can all enjoy!!!!

Timbuktu

I have to admit I'm feeling a bit guilty after reading how you feel about avoidance.  I'm the one who avoids people.  I so don't want to discuss what's going on or get those looks or have gossip going around that I do everything possible to avoid people I know, who don't know about me.  I drive miles away to shop in neighborhoods where I know no one, when I can shop, that is.  I avoid neighbors, not making eye contact, just slipping quickly from car to house.  I don't go out for walks where I might meet someone I know.  I just don't

feel up to dealing with this stuff with everyone.  I expect them to be shocked and feel pity.  I know that's how I used to feel.  It was painful to look at people I knew who were suffering like this.  Before I lost my hair I bumped into a couple I know, the husband was diagnosed with brain cancer years ago.  It was an awful prognosis and we all suffered along with him.  When I saw them looking so fit and happy it made my day!

The universe was saying to me "See!  It wasn't the end.  Even the drs can be wrong.  Don't give up hope."

I absolutely could not tell them what was going on with me.  I knew it would ruin their day.  

I just don't want to inflict this on anyone else.  It's just a reminder to everyone what can be in store for them the next day or the next.  Once my hair has grown back and I'm feeling a bit better it will be different, I hope.

But right now I want to protect myself from their sad looks and protect them from that sadness.  But now I'm wondering if I've hurt their feelings by my avoidance?  

MomMom

Footballnut,  yes, it's official, your husband's boss is a total dick!  So sorry u have to add this issue to others. I really think there are SO many  more good people in the world who are not clueless as these clods we are dealing with.  

swissmiss, So sorry that these Moms are not kind and caring people. As someone said, I think they are scared. Hang in there. Hugs to you both.

MomMom

Sharon, Your Mom is beautiful! What a lovely idea. I will bring a photo of mine with me to my last chemo 3 weeks from today. She died of bc 16 years ago.

Sunshine36

Swiss - girl,  I wish I lived in ok, I would be knocking on your door with a box of donuts and balloons and hug you! Im sorry you're feeling isolated. The women's reaction at the library makes me sad you would think she would want to teach her children compassion for others??! Grr. 

I have a few friends, good good friends, woman who were in my wedding and I in theirs!, women who held my newborn babies and ive cAlled family, ive had a few completley run in the other direction since my diagnosis.  Will get the obligatory text "hi how are you feeling" every few weeks, but even after my reply, crickets. I known sick people make others uncomfortable?  But it still hurts. Swiss, im sorry you are experiencing that

Timbuktu - I sometimes feel embarrassed in my own neighborhood too,  now when I go for a walk or run, I try to go out 6am ish before most neighbors are out. Even though my neighbors have all been great and supportive and brinkng meals, I just feel embarrassed sometimes  ugh!!!!

Football - sorry that your hubby boss won't let him go wjth you that just sucks but happy you found a good replacement buddy!  Xoxo

MommyQ

Hello Ladies,

I'm trying to catch up. It's my good week, so I'm trying to do all the stuff I can't do on my bad week.

Regarding pity looks, honestly, I don't really pay attention to whether people are looking at me or not. I guess ignorance is bliss???  But that's horrible the stories here about being ignored or left out. Maybe people are scared and don't know what to say to us?

Everforward-Nice picnic!

Footballnut-Congrats on being BRCA negative! That's excellent news. I'll be in the chemo chair July 2 with you, also getting Taxotere, but I will also have Cytoxan. Side effects of Taxotere include the potential issues with nails and the tongue. Try to keep ice chips in your mouth during the infusion to minimize that. Some folks ice their hands and feet too, but I haven't and so far, I only have the dark rings from the Taxotere. Sorry to hear that your husband can't go with you anymore. That's awful of your husband's employer to deny his support of you. So wrong.

Cold-I have the tight, sore leg muscles too! I thought it was only me. I can't reach my toes as easily anymore.

SharonDe-congrats on your last infusion! Yay!

Sunshine-sorry to hear about your mouth sores and swelling. I hope the doc can help you feel better.

SwissMiss-That is pretty awful about the mom who routed her kids around the bushes. Rude. Some people are just ignorant.

I have a new topic - PROTON THERAPY vs conventional photon Radiation Therapy. Anybody know much about it, or been through it, or is considering doing proton therapy? It sounds safer than the conventional radiation therapy, so I'm trying to learn more about it. I'm supposed to have radiation therapy after chemo is done.

EverForward

Sharon - hurray on your last infusion! I hope you do something wonderful to celebrate.

Swiss, I often feel the same way. I live alone in DC and my family is on the other side of the country. I have friends here, but they work, have young children, etc. I did rounds 2 & 3 on my own. In a way, it was good because I could flop on the couch when the SEs were bad and I could have a breakdown whenever I wanted without needing to put on a brave face for anyone. But spending too much time alone with myself (and the Chemo Dementors) is just not emotionally healthy. Mom arrives tomorrow to be with me for round 4 side effects (infusion was yesterday) and help celebrate my birthday on Sunday (typically a pain and ache day, so no wild celebration).

By the way, have I mentioned that the hot flashes have started. I was in a staff meeting the other day when I suddently felt on fire and I started fanning myself with my notebook like a mad woman! I now keep a regular hand fan with me wherever I go. Good times.

Timbuktu

My Sloan dr just called.  I wanted her opinion on 6 vs 3 infusions.  She said they only do 6.

There are no studies that prove it helps in early stage cancer but it does help in more advanced cancers.

But then she said"it's easier to cure cancer in the early stages and at the end of the day, if it should come back, you want to feel you did everything you could to prevent it."  That sums it up.

Now I have to talk to my local onco.

I feel shaky.  What she said makes perfect sense.  It's exactly the way I feel.  I just didn't want to hear it.

I wanted it to be over!