Starting chemo January 2009?

ktym

Renrel, I had something similar a couple of months ago.  Made me feel like I was back on TC again.  I was just pushing too hard.  I still have residual muscle weakness and bad neuropathy so I think I just pushed too much.  Weird feeling isn't it. 

Jess, you crack me up.  Hear you on the tuition, glad those days are done.  

 Hope all the jewels are doing well.  Told DH recently that I feel this summer like I've been able to reclaim my life back.  Getting together next year would be fun.  

jrgolomb

Hey there.  I went for my four month check up and he says all good, except for the red flag of wbc still.  Grrr... I was on cipro for quite a while in May....could that still cause low wbc again?  I forgot to mention that to him, of course. 

Hugs jjs!

PLUTZ

  Hi ladies. I hope everyone is doing well. Well my big day is Wed. A little nervous. Don't like having to spend 3 days in the hospital. I'm glad to get this last phase done with. My DH is buying me a new car. I said I didn't need one but he said I deserve it with what I've been through this past year. What a guy. We're waiting till the end of the month since I'm not going to be able to drive till after the surgery. I've been feeling good but this last week I really felt depressed. I don't have any friends nearby and my sis lives in WV. My oldest dd has been working alot so I don't get to see her much and my younger dd doesn't like to do things. Shes very frugal and won't let me buy her new clothes for school. She doesn't like to go out to eat. She reads and sews,so I guess thats a good thing. She is going to help me color my hair today. Well by the time I get back on this thread, I wil be home from the hospital. Take care and wish me luck.

jillyG

Phyllis, wishing you good luck and a speedy recovery!  Before you know it, you'll be home and resting and feeling better.  I really like this phase of the whole cancer thing....well, I don't enjoy surgery, but boy does it feel different when you look down and there is something on your chest.  It's a little odd to see something there after all this time, but it's a good feeling.  I am going for my 2nd fill on Thursday, so I don't have much to look at, but it's better than what was there.  I will be sending healing vibes to you on Wednesday   That's great that you will be getting a new car, as well.

Jess, don't know about the low WBC, hopefully someone else can chime in. 

I hope the Jewels are having a fabulous summer.  We're quite quiet lately, I'll take that as a good sign!!!! 

ktym

Phyllis, where are you having your surgery done?  Good luck, we'll be thinking of you.

JillyG, yeah, I think it is a good sign.  I know I feel like more my old self and like breast cancer no longer dominates my life. Good feeling

jrgolomb

Good luck Phyllis

Jilly- I postponed my nipple reconstruction , but I am glad I do have a foob there.  The radiation really did tighten up the foob and it sits higher than the "real" breast, but I still appreciate not having to add anything to my bra.  But that's me, my mom didn't seem to mind, she had a mx on one side and wore a bra for a while and has recently stopped and seems fine with no bra at all! That makes me laugh because I remember getting lectured by my dad and mom when I went through the " I am woman, and I am going braless! and so that made me feel liberated!" period of time.....guess that dates me a bit , huh?  ( ye ol hippie!  )

jillyG

Jess, the nipple thing is such a hard decision for me.  I 'think' I have decided that I won't get nipples but I am going to get the 3D nipple tattoo instead.  If I still had my other boob I would reconstruct to match but since I don't have any at all, I think the tattoo's are a better option for me.  I already like that I can wear shirts without a bra and not have a nipple to try to hide.   I think I will know for sure once I have all the fills and get the exchange.  I few years ago I never would have thought I would be making decisions about whether to have nipples or not.....this whole cancer thing is one strange experience.....

PLUTZ

 Hi. Thankyou for all your  good wishes.Had a sleepless night worrying about tomorrow, but it will be over soon enough. I am having my surgery At University Hospital. Its a wonderful place. The doctors are amazing. So hopefully I won't have to stay 3days. I'm still waitng on a call back from te doctors office on what time to be there. I got a call from the hospital and th nurse thought that I would have to be there between 5am and 6am. Ugh  sure hope not. I will let all of you know  when I get home how everything went.

jillyG

Yes, please keep us updated Phyllis.  The worrying is a pain, I wish I could help you with that.  I was very nervous too.  Just think about all you've been through, your one tough cookie, you've endured a lot more than most of us, so I know you will get through this just fine. 

I was in hospital 3 days for the mastectomy and TE placement.  I had to arrive at 5:30 the day of surgery as well....yuck.  I don't think I would have been able to go home before the 3 days were up, but I sure couldn't wait to get out of there and back into my own bed.

 Let us know how it went, when you are up to it   Hugs to you! 

ktym

Plutz, sent you a PM.  We're all thinking of you and pulling for you

brendafromflorida

Hi Jewels,

It has been forever since I have been on here.  It has been a very busy several months for me.  It sounds like everyone is doing well.  I'm sorry there are just too many posts to respond to each of you.  I think of you all often even though I haven't been here.

 I started my recon in January.  Developed a horrible, nasty infection and wound up in then hospital for a week on IV antibiotics the first week in Feb.   I had a TRAM flap so now I have a really flat stomach.   Love that.   Because of the infection we lost some tissue from the new one.   He did a bit of repair and a lift on the other one but they still don't match.  What a process.   But at my age (64) to have one good one is something.  My PS said after the surgery, "You have one perky boob there.  Looks like a 16 year old)"  I'm sure he was exagerating but it was nice to hear.   I see him again in Oct. to see about an implant in the new one to bring it more in line with the perky one.  The radiated skin has not been easy to work with so he has really been challenged.   He is wonderful though.   I really like him.   Tissue taken during the lift on the other one was all clean.   WOOHOO!  

All my follow-up appts. with onc have been going well.  Everything is clean.   Lymphedema is really annoying but something I have to live with.  

Lots of love to you all and good luck with everything.  

jrgolomb

Wow Brenda, so sorry you had such issues with recon and all that.  I too have trouble with tightness in my foob due to radiation.  I guess that is why I am waiting to have the 3d nipple surgery.  I mean the PS said he has huge amounts of reconstruction and build up with I had the tissue expander exchange and my breast are very uneven.  That part bums me out the most. 

On a different note, I met a BC.org girl!  She is a chatter and was the first one I talked to the most when I was first diagnosed.  I spent a great deal of time in the chat room and found huge support there.  She is in Illinois, on her way to Toronto to meet up with another BC.org person and was able to drive on a freeway an hour from my house, so we met at a restaurant.  I was nervous at first, but I guess the chatting and familiarity with those of us on bc.org broke the ice and we talked for a couple of hours.  She went on her way , but it was so wonderful to be able to meet with a person face to face who has shared this similar experience.  I mean, I have been having issues lately with the family who are so desperate for me to be well and to never have the cancer return and so they don't want to talk about my worries, or my fears or even my aches and pains.  I guess I want the same, but the reality is every four months I go for a blood test, and we search for lumps and if I have an ache and pain I still do worry.  Ya know?

Anyway, it was great to talk.

Hugs all.

ktym

Good to hear from you Brenda.  Happy to hear the infection has cleared and you're doing so well

Jess, that will be us one of these days if we can get the work schedule between us to work

I've been doing so good this summer. Cooler weather and heading into Fall is bringing it back.  If I keep associating Fall and winter with my cancer I'm in a lot of trouble living in this state

ktym

Phyllis hope things went well and you're recuperating well and home soon

Renrel

Phyllis, hope everything went well.  Looking forward to hearing good news when you are ready to get on line again. 

Brenda, sorry to hear about the infection.  What a bummer. 

Well, guess who after selling off all the baby stuff appears to not be in menapause after all?  (not that I am likely to be having another baby anyway, but I was thinking it would be more of a miracle than it actual would take.)  At least I am assuming it is that and not uterine cancer, which I think is one of the possible side effects of the chemo. If I don't stop bleeding I will reevaluate my assumptions.  In any case I have womanly bleeding again, which of course hit while I was on vacation and I had no supplies.  But I am happy to still have aunt flow visiting.  I am assuming that I will all get back other moisture with this and intimacy will be less of an ordeal.  Not that it is bad, it just takes so much work and additives to make things work.  

We had a nice vacation on the Cape.  We were in the pool just about every day and DS is now able to swim with his face in the water, float on his back and do a somersault in the water - so long as he wears googles and a nose clip.  He also gave up his potty seat (the kinds that sits on top of a regular toilet seat) while we were on vacation and got his first pet - a hermit crab he called pinch.  But this evening pinch lived up to his name and DS does not want me to ever let him out of his cage again.  We also went to the beach several time, played mini golf, went on a Pirate Adventure (ARRRRRR) and ate lots of fried sea food and lobster and Magaritas and shirley temples.  Oh, and DS played his first game of real monopoly (as opposed to jr. Monopoy). Tomorrow he starts at a new camp. We liked the one he was in all of last month but we could not afford it for more than a month. This one seems like it will be good but no swim lessons, just free swim at a different place every day.  He will be there for 2 weeks, then one more week at a a camp run by his old preschool during a few weeks of the year.  Then a week with my parents on LI.  Then back to school.  

I have an aquaintance online who is living my nightmare right now.  All through this experience I have found myself saying, it is OK because it is me and not my son. Well she just found out her son has lukemia.  A very treatable kind, like goodness, with an 80% recovery rate, but I think he is looking at three years of chemo, or something like that.  He is only 4, so he does not really understand what is happening and does not want to take his meds.  He is on the steroid which make him aggressive which is so hard on his parents, as is watching him in pain and fighting him to take the meds, all while caring for his sister who is I think 2 and is baffled by all of this.  If you would say a few prayers for them I would appreciate it.  

ktym

oh Renrel, you're right, always rather it was us and not the kids.  Sure will do that for your friend.  Happy your vacation went so well.  Love hearing about DS,  Feel like we're all watching him grow up.

Phyllis, hope you're recuperating well.

Hello to the rest of the Jewels.  

ladyjane54

Renrel: Praying for your friend's son.  It sounds like he has the same thing one of my three year old students was diagnosed with last year.  She has been undergoing treatment Chemo, etc. etc. In and out of hospital with fevers and all that.  She is doing really well this summer and her mom says she is almost back to her old self.  It is a long long long road in the treatment phase for them, but cure rate as you said is very good.

Phyllis.  Hope all is going well and you are starting to feel better after your surgery.  I don't get to post much but do follow the thread daily and have been thinking of you.

Sorry to hear about your infection Brenda.  I have totally put off my recon this summer because I had that infection in September right at the end of treatment and I am feeling so good these days I am terrified to go for recon because I worry about infection.  That was one of the hardest parts of the whole journey for me.  Very painful...Well I have now decided to wait until December over Christmas break for recon as I procrastinated the summer away and never made the all to the PS and school starts again in a few weeks.  I did really enioy the summer though.  I think someone else said it and I have to agree what a difference a year makes!!!!!  Never cherised my strength, health and enegry so much until it was taken from me for almost a year.  Its back (mostly - still have THOSE days - I am sure you all know what I mean) and I am loving it.

Starting to look forward to school starting again.  I am teaching five afternoons a week this year so I can be home with Grandbaby in mornings. I am not sure if I told you guys but my DD got accepted to nursing school and starts this month.  I am so happy for her.  She is 27 and has finally figured out what her calling in life is.

Well gotta run.  Think of you all often.  

Patti

jillyG

That brought tears to my eyes about the little boy with leukemia.  I used to work at a children's cancer centre and it was heartbreaking.  My job was to register kids on trials and do research so basically I read the charts of all these kids all day and when I got pregnant for my son I had to switch jobs when I came back from maternity leave.  I cried most days at work and now that I had a baby I didn't think I could do it.  On the upside, we had to do 5 yr follow ups and I used to call the families and hear about how great the kids are doing and cancer free and life is good so that was nice.  I am thankful for my kids health every single day and I think it is much much easier being the patient than the family.  

Patti, great news about your daughter, that's awesome.  My husbands sister is turning 18 and she just graduated high school and wants to go into nursing, we are all excited that she wants to do that.  It's such a great profession. 

Renrel, you guys sound like you are having a blast this summer.  I'm jealous about the seafood and lobster!  I grew up in Nova Scotia and we're known for our lobster and now I live in Alberta and I miss the ocean so much.  I am headed to nova Scotia next week for a week.  It will be great.  I am definetly planning on eating a lot of scallops, and clams and mussels and anything else I can get my hands on.   

Phyllis, we hope to hear from you when you are able.  Hugs to you. 

Jess, that's great you met a real live bc.org girl lol.  There is really a connection between survivors isn't there.  I think we are all instant friends.

Brenda, sorry about the infection.  How are you doing now?

Ok ladies, that's it for me.  Talk to you all soon.  Love you Jewels!

Jill

PLUTZ

hi ladies. Well I got home Sat. Couldn't move around much. I'm doing better but have to limit my activities. I'm not so achy anymore but really stiff. Its very hard to sleep. I've been propping up pillows just to get comfortable. Anyways, the surgery went well. My left arm is so bruised from ivs and blood being taken. One day 3 nurses tried to find a vein and they ended up getting a resident to find one. Then I had a low grade fever for a couple of days. My wbc was low and I almost had to have a transfusion but didn't have to have it. I have this binding wrapped around me and the nurses didn't understand why I had to have it on after the surgery, so they removed it and the doctor told them I had to keep it on. Its very tight. It doesn't help that I'm bloated and constipated. I have 3 drains. 2 are only draining a little bit now so hopefully they will be removed soon. I'm still waiting to hear from the dr. office for a followup appt. A home nurse stopped by today and said everything looked good.

I'm glad yu are all doing well. Hang in there Brenda. Take care ad I'll post soon

jillyG

Phyllis!  So glad you are home and resting and that everything went well.  Sorry you had the fever and the low WBC's.  I bet you are just exhausted.  How are your drains doing?  Did you get any out yet?  I hate those pesky drains.  (((HUGS)))

ktym

Phyllis, thinking of you and hoping recuperation is going well and drains are out soon.

When do we ever get over the breath hold and dropped gut feeling everytime we feel a twinge or lump?  Got this lump that feels funny to me on the mastectomy side.  DH can't feel anything so it is probably my paranoia in action knowing I have a visit with my Onc next week.  Working hard to quit doing this to myself

Renrel

Kmmd - I think it decreases but does not go away.  The trick, I think,  is to learn to live in the moment, not in the past or the future.  Yoga and meditation help but it is still hard.

The last couple of days I have been a bit tense over irrational fears myself.  Why do my legs hurt?  Is it left over aches from biking on the cape for the first time in years or is there cancer in my bones?  What is that weird pimply thing on the inside of my elbow that is hard and not going away, a dermitogogical anomoly, or breast cancer spread to my skin?  Will I get skin cancer on my back due to that burn I got on the Cape when I was not careful with sunscreen mid day at the beach.

(argument inside my head when I think about that sunburn- Stupid, Stupid Stupid!!!!, Now now, nothing to be accomplished by going there.  Whats done is done, humans make mistakes. Just go forward and live for the day.  OK, I wil try, but,,, no but!  I love you and will not allow you to be mean to yourself.  Sign, ok.  I am what I am and that is all I can be.  I am worthy of love, as is every other being I meet.  Work on that, not on what happened yesterday......) 

 Anyway, my diagonis 2 yr ago was a few weeks after returning from a Cape vacation, on the second day of Rosh Hashona.  Well I just got back from the Cape last week and Rosh Hashona is the week of Labor Day, a week before I have my next 3 mth check up.  So I am getting all nervous because of these three things happening so close together.  Nonsense, but my undisciplined mind still keeps running to this room in my head and I have to keep calling it back to my breath and the moment at hand.  

Today a power surge took out our TV, so we are shopping for another.  If it were not tax fee weekend in MA I would wait a week or so and try to get DS withdrawn from TV.  He can't seem to find anything to do if it is not electronic or involve one of his parents interacting with him. 

ktym

Thanks Renrel, you are very sweet.  Hopefully this year will build new memories and the others will seem more distant.

ladyjane54

Hi Ladies:  The fears comes when I least expect them. I too have been having back pain and bone pain and wonder if................Really try not to go there but it happens.

 On Thursday I had a mammo done and thankfully it was all clear!!  Hooray Hooray.  Did not realize I was really stressed about it until I was on my way to the hospital.  All of a sudden I had a really bad feeling about it and felt like crying.. Was crazy.  Just as I said to my DD who was driving "I have a really bad feeling about this" my husband sends me a text and tells me he is going to meet me at the hospital.  I immediately knew he must be having a bad feeling too and burst into tears.  He said no he just wanted to be there to celebrate with me when I got the all clear but it really scared me that he decided to come at the last minute.  I thought God was working in his mysterious way again and paving the way so I'd have support for the bad news.

Well I think that this will go on or a long time but at least for today I can say "ALL CLEAR"

Hope you are all enjoying what is left of summer.

Patti

jrgolomb

I have had the most crappy , sucky, mean, shocking night .  My dd told me I used my cancer as a martyr- is that possible? that you could have cancer and be a martyr over it?.  My bff bailed on a business deal I had with her for the last several years and did it contempuously and directly at a dinner to night.   Dh laughed and said I created brats like I created my cancer.  Gosh, I didn't realize I had that much power.  I can create brats, a bad business deal and cancer.  wow, what power.  I am sure the tamoxifen isn't helping much, but darn it I feel like shit and I am crying my eyes out and I don't know where else to turn.  I know you all via many correspondances and i feel like I should apologize for this, but gosh I am lacking in support, I tell ya!  Thankfully,  I have met two bc sisters and both times I was able to lock on face to face and laugh and cry.  True, for only a short minute or two, but the resonance will last.    I thought getting the call about my cancer was bad; I am not sure anymore.  I am not quite sure what I want back from the January Jewells other than a space to vent.( scream , rage and roil and the question---what the hell????)

ktym

ladyjane, that brought tears to my eyes.  I'm so happy DH was there to celebrate with you

Oh Jess, I'm doing a lot of traveling the next few weeks for work, otherwise I'd say we need to be making a date to meet somewhere 1/2 way along I-96.  Do you know when you're moving DD to Ann Arbor, or do I have that wrong and she is attending somewhere else.  Do you think DD is acting out because she just wants the worry of cancer to be gone and when it can't be she blames you instead of the disease?  A good old Ann Landers wet noodle smack to DH because neither of those is true.  Had quite a conversation with my Onc about balancing healthy eating, exercise, weight management etc. with guilt over this disease.  She thinks sometimes we take on too much guilt over things we did to cause it because it makes us feel like we have more control over keeping it from coming back.  Like if we change those things we'll be safe.   Personally think balancing life stress, exercise, healthy eating, etc are good for us for many reasons, but am sick of the attitude--perpetuated in the press--that we are to blame for our disease.   Little off track here.  Hugs Jess

brendafromflorida

Thanks for all the support.  It really helps.   Reading all the posts are many times encouraging and sometimes heartbreaking.  It is so hard to hear about children with a chemo future. 

Jess, I agree a wet noodle is in order.  Unfortunately, the ones we love most are the ones who also hurt the worst.  I know they can't possibly realize how much.  Hang in there.  I battle a bit of a different situation.  My SO has been so supportive but he still treats me as if I am still very fragile.  I am trying to be strong and well and I don't want to be constantly reminded that I am not.  I know he means well but it is hard.  i guess I will need to speak up. 

Phyllis, glad to hear you are doing well.  Yeah, those drains are a pain.  I only had 1 this last time but i still hated it.  I am doing well now.  I am pretty sure we will be able to complete the process in Oct.    I know my foob will not be perfect because of the damage done by the infection, but i will be happy if it the same size.  Not like I will be going topless anywhere. 

Stay strong everyone.  Every day is a challenge to not think about recurrance. 

Anyone having problems with lymphedema?  I can't wear the compression garments all day without my hand swelling even more than without them.  My arm also really aches with them on.  It may be because I am on computer all day at work. 

That's it for now.  Big hugs!!!!!!

ktym

Brendafromflorida.  Yes, luckily if I'm careful and wear the sleeve mine if under good control.  Maybe you need a gauntlet for your hand to wear with your sleeve?

PLUTZ

                 Hi ladies.  I'm doing ok. I'm really sore from these drains pulling. i have a dr. appt. tomorrow. Hoping they will come out but I still have a lot of drainage from one of them. But I'd be happy having 2 removed. I can barely move around these last couple of days. I'm glad to hear everyone is hanging in there. Thats all we can do. I forgot to mention the last time I was on that my husband signed our family up for the Susan G. Komen race on Sept. 11. He's running the 5k and my DDs and I will do the walk. I can't wait, but I need to get my strength back and start walking a bit more. Its coming soon. Also I am picking  up my new car  Fri. We are having a sunroof installed.  We bought a 2011 Hyundai Tucson. I love it. Can't wait to drive it. Have a great week and I'll stay posted

jrgolomb

Phyllis--You will be so happy when the drains are out!