May 2010 Chemo

Hi girlfriends,

I went out for the first time since chemo - to get my Zoladex shot - and so far so good. I'm a little out of breath, but I can bear it.

Leanna OMG you bring me into my teens - thanks for that ;-)! Sorry to hear about your healthcare system, I guess we're quite lucky over here, though we start paying for more and more things, but it's still far less than you do...

njbhwgirl So sorry if I have offended you, I can imagine arthritis is horrible, I just thought it was better than bone mets ... me and my big mouth! I pray that you get better soon!

Jenn and Daiva Ooooh, I can see now I am lucky. Truth is, I've always been clumsy, I've been hitting doors mostly, and this hasn't gotten worse yet. As for keeping track of things, I must write them down and this still remains the same too (cheers njbhwgirl :-) ).

Daiva Meds do add-up in our bodies. What's more, once you're done, your brain is giving a signal "it's over, you can relax", so your entire body that has been behaving itself all that time finally lets go. Hopefully you'll be getting better and better.

Patricia A baby grand piano? Wow! Enjoy it!

Hugs and love to all of you, even those whom I don't know and don't post here anymore :-).

Jersey - wow, yes, I know that first PS I made an appt with had a very long waiting list.  I have my appt with the new one on Monday, so I will be asking lots of questions... re TE... rads... exchange...  My understanding is they do MX, put in TEs... I didn't know about waiting for rads until they are fully expanded... how long does that take??  And, then the exchange 6 months after rads.  Hopefully, my PS can plan on scheduling that now, which will put me around June next year.  I'm amazed at all the waiting!!  Seems to me we should be pushed ahead of cosmetic surgeries... but those are probably more lucrative!'   Oh, and I am still having neuropathy issues.  Stubbing my toes, falling up stairs, fingernails hurting, discolored... I hope it goes away!  I don't know what the hosp stay is for the DIEP, it's one night for the mx, I'm guessing 2 nights after DIEP... maybe 3 if you're having any difficulties. 

Jenn - that's awesome that your son loves his sitter!  Sometimes, I know it's hard when they want to go... but it really is just that is seems more fun to play with all the other children!  And, the chemo... I'm not bouncing back from this last AC either.  I woke up this morning and felt like I had a hangover... headache, stomach rot, nausea, just felt bad... took a bunch of pills and felt better!!  It's just so frustrating to feel bad for so long; I just want normal again!!!  Don't we all?  Sorry about your freezer!    My brother tried to tell me I was 'lucky' the other day... and I said, no, "blessed" I am, but lucky no!  Hope your cold clears up soon! 

Daiva - Yes, surgery in October is MX and ALND.  I'm still very fatigued too, and was very anemic this round...not eating much is not helping either.  I can't even imagine when I'm going to be able to go for a run again... my butt looks like cottage cheese....

Latte - I think all your questions were answered, but the rads would damage the tissue, that's the reason for the TEs and the wait.  And, I believe the TEs hold the skin ready for the exchange from the abdomen area. 

Patricia - A Grand Piano!!  You go girl!!!  That's awesome... can I assume that you already play?  That's something I always wished I had done!

Magda - Hope it stays bearable... bareable?? for you!!   

Theresa - ((HUGS))  I hope you feel better soon too!!! 

Taking Ryan (and Nolan) to football practice in a little bit, then looking forward to a good night's sleep.  These night sweats wake me, then I'm freezing, then some of the meds give me weird dreams.... I don't think it's possible to get a good night's sleep taking pills, but I think it's better than without!!  .  Tomorrow is Thursday... usually the day I start to feel recovered from AC... here's hoping that hold's true!!

majdula:  oh my goodness no girl..you never offended me.. Maybe my writing came off the wrong way.. I apologize...I am just ticked off with the arthritis. I suffered with my right hip for 5 years then finally decided to have hip replacement. This past  year I could walk forever and go back to gym. Seems during taxol it attacked my back and left hip. Now I am walking bad and in constant pain...damn cancer..damn arthrithis;;;damn getting old.

okay I damned enough...

Leanna:  You have had such  rough road and your so upbeat about it. How do you do it with such small kids and function..your my hero sometimes..well many times.....

Irishtess: Thanks for the encouragement. you are so right. and I will definitely make plans next year when many of us can join

having a wicked rain storm here...rain is good for we have had very little and anyhow my sprinkler system is broke so needless to say my grass is brown and needs the rain

night all 

thanks everyone for all the advice about DIEP and radiation etc. I think I have decided against the research project, and am currently looking at BMX and delayed DIEP. But I will know more after I speak with the BS and PS in a few weeks...

I hope you all have a good weekend with minimal side effects!

Seem to be getting stronger as time goes, but I am still impatient.  I've started walking some and stretching.  The eating is about the same.  I'm trying but don't feel good.  The 'roids are finally getting better but I have a yeast infection that just will not go away even on Diflucan.  I'm trying to take over more with caring for the boy.  He's a handful.  Other than that, I'm still here.  

Good Morning My Dear Friends  I do feel that each of you have become very dear to me.   I am awake at 4:30 am due to steroids from treatment yesterday.  Only one more to go.  Yeah Leanna for being finished!  Next thursday I will join you all who have finished chemo.  Number 11 is showing itself to be a doozy.  I had to take valium to counteract the steriod and get sleep.  I forgot my pepsid so I awakened with terrible heart burn, as well as achey muscle pain, which usually does not come till the third of forth day.  I am not sure what caused that, but vicidon helps me with that.  I will be so glad to dump these meds.  I was on zero meds before dx.  About the piano.  Yes, I play, took lessons several years as a child and a few years as an adult.  I am an intermediate player (at best) but will take lessons again.  When I was eleven I saved money and bought a hugh upright piano( for 25 dollars) one day from the classified, when my parents were away for the day.  I asked our rural mail carrier to transport it to our house.  Our house was a very small 4 room rental ( we moved 54 times before age 11)   Needless to say my parents would never have approved, as I had been asking all my life.   I learned a lot about dreams that day.  No one can make them happen but you. Anyway, all my life I wanted a baby grand, and this one helps me realized that my playing has been very limited by the poor quality of the piano I had. (lost it in the divorce, no room). So I am not sorry about this recent f... cancer decision. The piano is very beautiful, but most of all the quality of tones it produces makes me want to learn more and more.  Tess, loved your story about the guitar teacher. Leanna, it is never to late to learn music as an adult, easier, actually.  Since my sweetie is learning classical guitar, we plan to play together and learn together.   Leanna,  About regaining your strength after surgery.  I had  a modified radical  of my left breast  and 12 lympth nodes removed, and through yoga and weights that I carry as I walk, I regained my strength (but  not all my sensation) in that side of my body.  I can do plank, and yoga moves that require the same  body support by my hands, but I am having to increase the time gradually.  I love rock climbing( although  I am an amature) , so I want that strength to return as well.  I have full confidence you can get back to your push up.  No lymphodema isssues for me with my exercise.  So you can do it girl!  I do not know how the reconstruction will effect your progress, but stretching those underarm muscles is very important.  Mine are nearly equal in length now to the other side.  Paxton, so good to hear from you.  We all have those lower butt and vj  and UTI issues.  Hell fire if they are not a pain!  I have to fissues from a 10 lb  4 oz baby delivered vaginally, so I get it Leanna.  anyway Paxton , we are all rooting and praying for your strength to return, and to begin to hear from you.  That boy of yours deserves to have a healthy mom who is full of energy for  life.  I want that so much for you and all the mothers.  Daiva, I want a mani and pedi, but my nails are all loose half way down and I am sure I will loose most of them.  I feel like taping them on so I do not jerk them off.  Anyone figured a solution to this.  Mostly, I fear infection in the nail bed, and wow, I already have carpal tunnel from playing that new piano.  Wish I could send a pic, but I cannot seem to work this site to add a pic.  Latte, I know what you mean about reading the possible effects of some of the things we go through.  With the transfusion I had, they now list HIV, liver failure, rejection and instant death.  Wow.  So glad I only had to have one, and I refuse to worry about the future of that decision.  Magda, I loved hearing more about your live and job, etc.  Latte, tell us about living in Israel.  I am a real travel nut, and want to see the world before I die.  So I have three trips planned, Paris, the one to Vietnam, Thailand, Cambodia Singapore, Hong Kong (with my sister) and another with my honey for a month in San Miguel  Mexico in April.  We stayed a month last year and loved it. Since we are both photographers, we love traveling and seeing the world through  our cameras. Sacphotomom  hope you are okay and look forward to hearing from you.  Summer hope your cold is better. NJ girl, hope some of your pain is resolving. My white blood count was 1.7 this week and I am trying to avoid every risk for infection.  Just one more week!  Sorry this is so long and hope to catch up with everyone I missed next time.  I am just a little hyper as you have guessed.   Hugs and a dream to met you all face to face in the future!  Patricia

I can't believe how much i missed in only a week. I have been reading everyones posts but then end up getting so tired that I fall a sleep with out posting.  I am so glad for those of you who are done with the chemo and rads.  I have 10 more rads to go.  Today I went for my boost set up and they couldn't take the pictures because the remotes wouldn't work.  The went ahead and marked me but will take the pictures on Monday.  So far so good with rads, but I have had some trouble with fatigue.  Monday I came home from work and decided to lay down for a half hour and woke up 2 and a half hours later.  I read that some of you have lost weight with rads, I have gained weight,  I have no energy to exercise, but am very concerned with gaining more weight once I start on tomaxifen.  I have also been having a lot of hip pain and leg stiffness.  Has anyone else experineced this?  I will be very glad when this all over!  As some of you have commented f*** cancer.  I hope all you have a great weekend.  I have 2 soccer games to go to.  God Bless all of you!!!

Barb

Jenn - Your post made me feel good.  I don't know if I can exactly explain why... I think it's just the quiet serene tone of all the crappy-crap you are going through, but you aren't complaining... if that makes sense??  I'm so glad you had a good time with your mom yesterday, it sounds like loads of fun.  And, from your picture, I think you are totally hot with a short buzz and I love your dark hair!  I'm sorry you are having trouble with your hands... seems like a lot of us are being hit with delayed chemo-effects there. boo.  So, do you have one more chemo??  ((HUGS))

Barb - YAY, 10... you'll be in single digits on Monday!  Hooray!  What's a boost set?  Have fun at soccer... we have a football game tomorrow and practice on Sunday.  My husband leaves on Monday for the week, but my mom gets here Sunday (Yay, I think.... ok all y'all with that love/hate relationship with your moms are with me).. but, I'm really looking forward to seeing her this time... which is kind of, no, really odd for me.  hmm.   I'm sorry about your weight gain - you'll get your groove back soon! 

Tess - As usual... you are so right.. I'm looking forward to everything except work... well, work like I was doing it before.  I hope your nails grow out before you have any issues with them!! 

Patricia - I LOVED your story about the piano!!  And am encouraged about exercise by you!!  About rock-climbing - I have a good friend in FL, her son won the State for his age group, and I think finished 12th in Nationals... and one of the climbers from their gym (is that what you call it?) went to Worlds and finished 8th, his name is Ben.  There's a  picture on facebook of her holding for my son recently at their place in Florida while he tried his hand at climbing... but, he, like his dad, is afraid of heights.  My youngest will be the climber, but he was too small to do it! 

That's all I got ladies!!  A short one from me???  Yep.    Have a wonderful weekend everyone!!  I'll be back next week to let you know what my PS and BS have to say!!!  (((HUGS))) and prayers everyone!

Barb:  Great to hear that you're getting so close to finishing!  Sorry to hear about the weight gain,  I think I'm holding steady, but others may have different experiences.  Hi Leanna, Magda & Jenn (great post about your trip to the city of bridges!).

Question for everyone going through or having completed rads:  Any throat issues?  The last 2 days, I've felt a constriction in my throat, & trouble swallowing, especially pills.  Can hardly get one pill down (used to be able to take a bunch all at one time).  I don't see the rad onc til Thursday next week, so thanks for any info/insight.

Irishtess - I had the swallowing problems too, but not from rads (I'm not there yet). With me, it was because the tube from my port had moved and was pressing on my throat area - is there any chance you have a port and this is maybe what happened to you? (I was told that it can't be fixed - the port has to be removed, so I am suffering with it until I finish my last 4 chemo tx).

Patricia - love the piano story! Israel (at least the part where I live) is just a pretty ordinary place to live, not exciting or dangerous like you see on the news. I've been here for 17 years already. My dad is staying with me at the moment and he can't believe that it is so "normal". You're welcome to camp on my couch if you ever get over this way :-)

sacphotomom - sorry to hear what you're going though - hope you get out of there soon.

Hi my sisters! Sorry I haven't posted in so long. I do keep up with everyone and I'm thinking good thoughts for all of you. Big hugs!! I'm so glad that everyone is either done or so close to being done with chemo.

Patricia - what an amazing piano story - 11 years old! WOW.

Sacphotomom - so sorry you are in the hospital! Get well soon.

Tess - Funny you should mention swallowing the pills. I never had any trouble swallowing pills and a few weeks ago (during rads) I almost choked on one. It has been a little harder to swallow the bigger pills but my throat doesn't feel funny at all.

As for me I am now DONE with rads. I had my last tx on Friday but I have been working like a lunatic. In fact I am working now (yes 7:30pm on a saturday). I have a deadline on Monday which is why I've hardly been on here. Rads went really well. I did not get fatigued except for one week at the beginning. Good thing because I had no time for that. My skin held up great up until the very end. Now I have one red spot in the boost area. Leanna, most people get a series of regular treatments - that is radiation to the entire breast, and then get a few treatments (I had 7) directly to the scar area where the tumor was. The boosts aren't more radiation than the regular treatment (in fact I think it is less radiation) but the treatment is more cutaneous than subcutaneous which is why your skin feels worse with the boosts. The boosts are weird because they need to mark the treatment area and for me they did that with sharpies and I had to make sure not to wash it off so I went around for 1-1/2 weeks with sharpie markers on my boob.

For those of you doing rads or moving on to rads - good luck!!!

njbhwgirl - I can't remember when you said our gathering was going to be or if you are even having it anymore but the only week I cannot do is the week of Oct 9th and that may very well be when you were going to have it.

I really hope we can all get together soon once we are completely done with treatment and everyone is feeling back to (new) normal.

HUGS!!!

Right now I am wishing that I could take to one of you gals on the phone,,,I have had such a horrible day.  I am being very emotional about being stuck with so much junk would like a break..for being in a ONC ward  they seem to be clueless about week after chemo SE's..and tired of gettig the really that now what? oh ok so sorry with a smiling nod ,I just want to smack ..come on cream of mushroom soup..with chemo mouth.

Denise:  Just sent you a PM.

Drim:  A big hug on finishing rads ~  glad you had only minimal SEs.  Jersey is having the get-together on Oct 16.  I can't make it (some high school GFs contacted me after learing about my dx, so we're having dinner that night in Scranton, where I grew up).  I'll really miss seeing all you girls, but hope we can meet again soon.

Magda:  Thanks for the info.  Since I don't see the rad onc til Thursday, I'm going to mention this to the techs today.  What's your paper on?  How far along are you?

I brought some work home to review this weekend & didn't look at any of it, so I need to get to it this am before leaving for rads.  Hope everyone has a good day.

Hi girls, I've missed you! My cold is gone and was actually short lived. I finished my first week of rads but it's taking some getting used to a new routine of driving 2 hours every morning! I'll get used to it I guess. So far it's uneventful, I feel like my skin is getting tighter but so far only a slight redness.

Paxton - It will get better everyday, I promise {{{HUGS}}} Patricia - You're almost there! So glad you got your piano, I loved your story! Re:yoga, your doctor didn't give you any restrictions? I had heard that you should stay away from plank and other positions that are weight bearing on your arms/chest. I'm terrified of lymphadema and I think I do have a small issue with it now, I'm afraid it'll get worse. Tess - Hopefully your rads are going smoothly. I am having some throat issues also. No problems swallowing yet but I have developed a very dry cough. I went into my session the other day and I realized at the last minute that I had earrings on so I asked the tech if I should take them off and she said "no, the radiation just misses your ear" and she showed me the angle it hits - it definitely goes straight across my throat. Redbarb - Can't believe you only have 10 more to go! Hopefully the fatigue doesn't get any worse for you - take the time to rest. I also have a lot of leg stiffness and hip pain, I was attributing it to lingering effects of Taxol but I do wonder when it will go away, it's been a month since my last treatment! Jen - So sorry about your neurapathy! Glad you had such a nice time with your mom. Leanna - I totally get what you mean on the "mom front" LOL I hope you enjoy your visit with her. Majdula - I have been working full time from home but I try to get into the office one day a week - I LOVE that day because I feel so normal! Denise- I am soo sorry! I hope you're feeling better and get out of there soon. Scream and yell on here all you want, we're all praying for you! Drim - YIPEEE!!!! Congrats on being done

Hi guys!  Denise - I sent you a PM... sounds like you have a bunch of phone numbers now!!

Met with the PS today.... really, really like him, but was surprised about a couple of things.  So, I'll have MX & ALND, with TE placement, and then go through rads after they fully expand the TE.... but then he said they like to do reconstruction 6-12 weeks after radiation... apparently, this is new medical knowledge that has shown more success than waiting until 6 months after radiation.... apparently more fibrous tissue forms when they wait longer.  AND, I expressed being upset by them taking all of my lymph nodes.... well, when he does the reconstruction, he is going to take lymph nodes from my groin and put them under my arm!!  This, I think, is pretty new territory also, but if it works.... and I don't see how it could hurt!!   

As for my job... that's a whole 'nother story (Tess.... PM to you).  Apparently, you just don't "renew" FMLA for another 12 weeks as I was led to believe!  My Nurse Mgr has to approve another 30 days, and beyond that; my Service Line Director has to approve any other extension (which I will need).... and then "according to policy" IF I am out of work for 180 days, I will be terminated.......  I will be calling HR tomorrow, but it sounds black and white.