Starting chemo Sept 05

tinkermax

Thans so much for thinking of us peggy, the photos are wonderful!!!

You sure earned that foot massage!!

hugs

Maxine

Liezel

Wonderfull pics Peg!  Seems like you had a lot of fun - don't think I would have been able to do it though!!

Nicole, good luck for your relay!!

Big weekend for South Africa and England this weekend!  We are playing in the finals of the Rugby World Cup!  No matter what happens - I still love you guys....

I have been keeping my recon and mast scars covered with plaster since AUG for the scarring.  This weekend when I changed it, I noticed four nodules along the scar on the ca side.  I immediately panicked and phoned my ps.  He seems to think it might be a reaction to the plasters, so I am to keep it open and put some Bactroban ointment on.  If it has not cleared by next Monday, I must go in to see him.  I can not see a difference yet, so you can imagine what is going on in my mind.  I have started a few projects just to keep my mind off it, and now my 10wk old puppy is also sick.  Not a good week.....

I hope you all have a lovely week.  The weather has turned, and it is lovely and sunny.  The fruit trees in my garden are carrying Figs, Peaches, Avocado and lemons, but "my" tree has absolutely no fruit.  Very sad.....

Keep well!

Liezel

leannem

Hi all



I haven't really been around much as you know but logged on this morning to see the terribly sad news of kelly (sedgymum)'s passing. I can't believe how hard this has hit me! I am sitting here bawling my eyes out. Maybe because she was one of the first to send me cards when I was so ill a while ago? Maybe because this could be any one of us? I don't know. I just know that it is possibly one of the reasons I try so hard not to be on my computer much anymore- maybe if I don't look people won't die??? You know when you play peek a boo with a baby and they REALLY think if they put their hands up to their face and can't see you you disappear?? That is how I feel with the boards I think- maybe if I don't look people won't get diagnosed, won't get mets and won't die. But just like a baby realising eventually it is all an illusion, I learn that staying of the boards doesn't make the shitty disease go away.



Sorry to pop in with such negativity I am just so sad.



love u all

xoxoox

susan_02143

Leanne,

I am sitting here sobbing. I have my husband crying. Some people just touch your soul. Kelly is the woman we all hope that we can be. A big hug to you.... Kelly touched all of us, and I hate the the world doesn't have her positive energy anymore.

How are you doing otherwise? Missed hearing your news.

*susan* 

susan_02143

oh Leanne, you don't have the power to make people die. Come back..... anytime. I want to hear about those two beautiful boys.

*susan* 

tinkermax

I too was devastated to see we lost dear sweet kelly, her picture with her beautiful smile was always an inspiration to me, and I always use to read her wonderful posts.

We lost another wonderful lady this week as well. 

Dear Ravencaine was another wonderful lady, who use to be a regular chatter here when I was diagnosed.  I use to practically live in the chatroom when I was on chemo, and use to chat with ravencaine often.

I am saddened beyond words...

maxine

susan_02143

oh maxine,

I didn't know about ravencaine. Another stupid loss for the world. Have a good cry...... this is really hard.

*susan* 

linny

Hi everyone, I have also been staying away from the boards because of the terrible sadness I feel for the beautiful women who have died.  Shelli, Jayne (who was so quick to go and so bitterly upset and angry) and Kelly who had such a gorgeous smile and wonderful encouraging words. 

Peggy, you are wonderful and inspiring - thank you for doing this for all of us. 

I am going to New York tomorrow for a few days, I havent seen the grandkids in a couple of months and miss them terribly.  My youngest son who will be 22 next month is getting married in Dec.  Unlike when my other kids got married, I have very mixed feelings.  Its not clear to me that he is mature enough, and why tie himself down so young.  Also, he has really bad prewedding jitters, and its making us all somewhat nervous too.

My sister is now 6 1/2 months past her stroke, she has made great strides and if she could speak properly, she would be like she was.  However, the speech is hard for her, and it does look like she will not regain her ability to walk.  She can transfer from the bed to the wheelchair pretty well.  I asked the speech therapist if she can write what she wants said, but the therapist said no - its the same neural pathways as speech - if she cant get the word, she can neither say it nor write it.  She is in a very good facility - nursing home/residence - and is continuing to get therapy there.

Linda

Pegk

I'm so sad to hear about the loss of these beautiful woman.

I did a Making Strides Against Breast Cancer walk yesterday-only 3 miles but I was able to raise some more money for the American Cancer Society. It is sometimes easy to forget, through all the pink balloons and festivities that the reason for these walks are that people are still losing the battle with this horrible disease.

I sometimes feel that I'm caught in the money making machine of breast cancer fundraising, but I don't know what else to do.

I put on a smile, remind people to get their mammograms and ask for money that I hope is going toward research and helping people without health insurance.

I just discovered that a childhood friend, who as a several year survivor, gave me encouragement when I was first diagnosed, has just been diagnosed with mets to the lungs and bones.



Linny,

Enjoy your visit with your family in NY. I hope your sister continues to make progress.



Peggy

susan_02143

oh my! I didn't know that the html feeding this site could get any worse. This is horrid.

Peg, thank you for walking.

*susan* 

txred9876

I have been kind of absent from the list for no other reason then the fatigue. I have been completely exhausted and having tons of tests ran since my accident back in August.

Apparently the Taxol has really screwed up several things and it may never improve. First off I have the severe neurapathy in my feet. I have had some difficulty sleeping ever since Taxol but after the wreck I finally went to  a neurologist. He had me do treatment for Vertigo (its wonderful ...no more symptoms), the brain mri, as well as two sleep studies.

Well the sleep studies concluded that I was not breathing an average of 11-15 times an hour. This is not like regular sleep apnea but the "cure" is still the same. I would just fail to breath...and they recorded my blood oxygen level down to 86%. This is very scarry as this would mean I needed oxygen!!!! Well the second test included the cpap machine i had zero non-breathing episodes and my oxygen level at its lowest was 94%.They think the nerve damage from Taxol is the culprit but with my new cpap (no one wants one...but I want some GOOD sleep!) machine I am slowly starting to get some good sleep.

I have two more Herceptin treatments (one on Halloween - oct 31st and the other the day before thanks giving nov 21). I will be so glad to be done.

I hope and pray for my sept. sisters each and everyone of you....

I know some of you are sad for those that passed on from this horrible disease...it is very very rough and I have lost several IBC sisters on my other list over the last couple months, plus my oncologists own mother had a reoccurance after 15 years and lasted just 3 months. We cannot control what will happen but just be there to support wherever we can.

Take care all,

Tina

ps i am getting ready for my Komen 5K on nov 4th

susan_02143

Tina,

We should throw a virtual party on the 21st!!!! You are coming to the end... I bet you never thought this day would come.

*susan* 

leannem

HI all



Back again. I found the passing of these beautiful women all a bit much to bear but am feeling better now I think.



Peg, I also wonder what else can we do other than get caught up in this pink, money making machine and hope the money is going to the right places. A couple of weeks ago I was asked by the National Breast Cancer Foundation to speak at a dinner for 200 people. The speech went well however I felt as though I was telling the story of someone else- not me. An older lady came up to me, and told me she has just finished her chemo earlier this year but was still going through some other treatments. She was clearly wanting to talk. But I just couldn't do it. I just couldn't talk with her and tell her she would get through it. There I was, meant to be some kind of spokesperson and "inspiration" but I couldn't reach out to another woman when she needed it. I just shut down and went blank. I feel dreadful now. I wasn't rude but I was short and I know I wasn't comforting. Has this happened to anyone else?



I also hate that I have not come out of all of this as a better person. While I am thankful I am alive I do not wake up everyday in a good mood, pleased the sun is shining and the sky is blue. I snap and yell at my boys, pick fights with my partner and am lazy. I need to exercise and eat better to look after myself (damn that zoladex weight) but I don't. I have no motivation to do so. I am not overly depressed (upped my lexapro a few weeks ago as I needed the extra but feel better now). I have a permanent bad mood either hanging over me or just off to the side. I'm easily annoyed and have absolutely no patience or tolerance. I can still have fun but it isn't as often as what one would expect after going through all the crap.



Does this make sense? It is really weird.



On another note, the kids are fine. My eldest turns 5 on the 12 November and I am attempting to throw him a pretty big party. Lots of kids and games sausages on the barbeque! Should be fun. He is still acting up a fair bit and we have yet another specialist appointment Thursday. Hopefully this one can help.



Scott is being moved out of Brisbane to another town about 15hrs south west. We have decided that for the time being the children and I will stay here. I am a bit scared but I suppose I have my treatment, doc's and friends here. Toben starts school and we were able to get him into a good local one but I am still worried about being alone. The position is for 2yrs but I am hoping we might be able to join him after 3-6 months. Basically, with all the relationship troubles we have had/been having he thinks the separation will be good for us. I don't agree and would rather move but he would like to wait. Hopefully the distance will make the heart grow fonder. Its hard.



Love to you all and I will be thinking of you Tina in a couple of days time on your 2nd last herceptin!!!



xoxooxox

foxxf

bump

leannem

hello again!



Well I have some news....I went to my herceptin and onc appt on friday and he told me that "we don't think its mets (the liver spots) so we are stopping herceptin at your next visit". I am in 2 minds about this and I am hoping you ladies can shed some light on it all!!



As you know I have been on the rollercoaster from hell with all of this liver stuff. The initial liver dx was mets and I was treated for it which literally nearly killed me, put my family through living hell (my children are still suffering from it- my eldest just had an appt with child and youth mental health) and just about destroyed all of us. Then they said it wasn't. Then we don't know so we'll treat as it was just incase. Now the same onc and same radiologist are saying it never was mets!!! How do I believe them? How do I know? No new scans have been done since 6 months ago so its not as though new info has come to hand its like they have just "decided". People have said to me that it is great news (which it is) though the cloud of uncertainty this "diagnosis" has come under is just a bit much for me. How can they just decide this week its not mets after so much uncertainty when they were so SURE it was mets originally?



I am really angry. Every day is filled with anger. And this was even before Friday's newest diagnosis. I am white hot with rage most days. Am already on Lexapro which has been upped from 10mg to 15 to now 20mg. I am cancerfree which has been my dream, my friends and family are moving on from it all but I am just SO MAD. I can barely function- I scream incessantly at the kids, pick fights with just about everyone, have no patience or tolerance. My relationship with the kids is average at best (you may remember they are now 2 and almost 5- new born and 2.5yrs at dx) because of how mad I am. My partner and I are just holding on.



Suggestions?? I think i will post this on the moving beyond as well- I need all the imput I can get!!



Thanks



xoxoxo

tinkermax

Hi Leanne

I would certainly want a scan, before stopping treatment, to be sure.

have you thought about counselling?.you have been through an awful lot, and it would give you the opportunity to let it all out, so to speak.

Just a thought love

max

Liezel

Hi Leanne,

I can understand the rage.  Like you said - the tx for the Liver Mets was really bad - and now they are saying it was all for nothing.....  I would be spitting mad!!  I would also insist on a scan to make sure.

I agree with Maxine - you really need to speak to someone.  Can you get away before Scott leaves? 

I am thinking of you....

Liezel

susan_02143

Leanne,

A part of me thinks that your doctors need to PROVE that they are correct. You have been through the ringer, and for them to expect you to trust them, seems beyond the bounds of human nature.

I don't know what to tell you about the anger. It is justified. But, it sounds like it is getting in the way, so maybe you can find someone to talk to. To this day, I wish I had talked with someone after my brother died. My anger management is NOT the recommended way!

I hope that you can find some peace. You deserve it.

*susan* 

oh! p.s. love hearing from you, even when it isn't pretty. 

susan_02143

So my friends....

Tomorrow morning I am off to Los Angeles. I am going to demonstrate a new software program that I have designed/built. This is a huge step, and I was pushed by my husband. Wish me luck... but... the reason I am posting is that on my to-take list, I had written "Notebook."

So I went to the notebook area of my shelves and pulled one. Next, I flipped through the notations that already existed. OMG! This was my medical journal.

I sat down, and read. It started on May 1st..... and went through to the first chemo. Reading this diary was astonishing. This woman was so calm as she found her lump, and started contacting doctors. As I read each entry, each medical professional's name jumped off the page, familiar and clear. Who is this woman who journals with such detachment?

Needless to say, I put this journal back on the shelf, and grabbed a different one to take to LA.

I didn't cry. Maybe I have just put this susan into a box, and closed it with heavey-duty packing tape. But as I sat there, reading, the names of all my September sisters went through my head. We are slowly moving away from each other, but each of you is burned into my memory.

Be well, my dear friends....

*susan* 

txred9876

Leanne,

Is there a way to get a second opinion away from these two doctors? I would not be comfortable with all that you have been through and maybe they have you on the wrong medicine (lexapro). Not all anti-depressants are created equal. I am coming up on the end of active treatment and I am kind of scared right now. I will still be on tamoxifen but the herceptin will end 11/21 when I have my last treatment ( I am so greatful as I have had a rough time with this drug - the one with no real side effects has presented many for me). My doctor is ordering a CT scan which I will do next week and then after the 21st I will not have an appointment for two entire months! I have sought family counceling for several reasons and it has just made the bond between my husband and I even stronger (but I feel we have a great "partner"for our counceling sessions).

Susan,

I kept a journal of sorts and it is rather intersting how we somehow detach ourselves...it is almost like the last two years have been a horrible nightmare and someday I should just wake up and it was all just a bad dream....know what I mean?

I have been living my own kind of nightmare with the neurapathy and not being able to drive due to the medication I am currently taking (the accident in August was probably due to me falling asleep - nodding off due to medication from the night before). My family will not let me drive and get pretty ticked off if I suggest it....so it is probably better for all of us if I just not drive. The CPAP machine is hard to get used to but I am not feeling as exhausted as I was.

'

The calendars my daughter and I were in (Pam my youngest) are available if anyone is interested.

(http://www.setonfund.org/?nd=full&key=24&data=data&view=1)

I hope the rest of our september sisters are doing well this holiday season!

Love Tina

tinkermax

I got the results of my head MRI today.....no cancer.or MS.....which is terrific, but there is something.

The report says the following:

There is a subtle area of apparent increased signal in the central and ventral pons seen best on the T2W TSE and FLAIR images.  Appearences in the pons seem to centre on the region of the medial lemniscus and more inferiorly over a wider area including the corticospinal tract - this appearance is of uncertain significance ? related to the patient's symptoms.  A neurological opinion is advised regarding further management.

Well.....no one seems to know quite what is going on........so im back ..waiting to be referred yet again..... meanwhile, ive lost most of my reflexes, hands are becoming more spasticated...and feet are deteriorating too....

anyone have any idea at all what any of these means?

hugs

max

Liezel

Tina, counting the days with you!  Glad you are sleeping better. It must be difficult not to be able to drive....

Max, very happy to hear no cancer or MS.  I hope they can help you soon.  Are you on any medication now?  Big hug and prayers to you.

Have a good weekend everybody!

Liezel

Calico

Maxine,

teriffic news at least.

Could you lay off the hormone therapy for a while to see if that is the culprit causing something? The AI's are known to do something to the bones....who knows? not everything is figured out yet.

Are you taking Fish Oil?

I am so sorry it affects your feet now too....what a bummer....I swear by fish oil, my daughter has so much reduced pain and more mobility since she also takes it for her hip, yet it is now going into an osteo necrosis...

Peggy,

thank you for rallying over and over!!

Tina,

Yipee for the last treatment and good luck with your CT. You must be so relieved!!!

Susan,

I know how you feel, I started to read the beginning of our chemo thread and it is weird to see us all write these lines.

Hope you do well in L.A.!!!

Leanne,

you've been to hell and back.

You are your best advocate and if that means going until you know for sure, then so be it. Keep fighting for more and better scans.

As for the anger, the only thing I can recommend other than switching meds is exercise to exhaustion. Excersise does boost serotonin.

Take the time when the kids are in kindergarten. Sorry to hear your partner makes it a bit difficult. That must not be easy either and can cause big frustration. But that is not your fault. He did seem a bit selfish at times and needs to learn to deal with it better. He could be on the receiving end too some day (meaning cancer for him like testicular or prostate...like my DH....it's a "blessing" that he was first if I may say that without sounding mean...you know how I mean that?)

I wish the best and hope there is some doc out there that knows more.

Linny,

hope all is well?

Nicole,

same for you?

Lynell?

I need to go for another colonoscopy and canceled the first one....I keep doing the austrich thingy....(stick the head in the sand and don't want to know, deal and see) out of panic....

I don't want to do Thanksgiving since the 2005 one was so horrible (my DH and DD were at the neighbors and I was at home after Taxol treatment, in pain and feeling lost and alone) that did me in for all Thanksgivings to come LOL I know it was not the holiday's fault but the chemo and yet...I don't want to hear the Thanksgiving word, ha!!!

Hope you all will have a good holiday dispite my misgivings with that particular one

God Bless

Pegk

I wish I had a magic wand and could make all of your pain go away.

I realize how lucky I've been with only modest complaints, like achy and sluggish joints.



Leanne,

You have every right to feel angry about the 2 years of your life that have been distorted so cruelly, but you are so young with beautiful children and a partner, who isn't perfect, but seems to be trying to support you in his own way.

I think you have a right to question your doctors who have brought you on this roller coaster ride. For your own peace of mind you should try to get another opinion.

Talking to a professional about your anger issues should help, to as well as adjusting your other medication.

Thanks for sharing Facebook with me. You seem to have a lot of friends who love you. Your son's birthday is coming up. I hope you have a fantastic celebration.



Susan,

Good luck with your venture in LA. I hope you get to enjoy some warm, sunny weather.

I remember reading your blog when we were all undergoing chemo. You were always so articulate about what you were going through and helpful to others. You proved yourself to be a strong woman, there is no need to dwell on that year.



Maxine ,

I'm worried about you. I'm glad that your MRI showed no cancer or MS, but I don't understand what the rest of the report means. You have undeniable symptoms. I hope you have an answer and some relief, soon.



Tina,

I hope you had a successful walk. Now you're getting treatment for your sleep disorder and your counting down toyour last herceptin. Yay! something to be thankful for. I'll be checking out your calender.



Calico,

How about some updates on your daughter and mother. I hope you'll be able to make some good Thanksgiving memories this year. Can you get yourself invited somewhere?



I'll be making Thanksgiving dinner for the first time in 3 years in my new kitchen! Not too big, just my immediate family, my MIL, SIL and BIL- that's 8 altogether. Actually my DH does the bird and I'll do the side dishes.



More news: my daughter noticed a lump on the abdomen of our dog and when we took her for a check up the vet confirmed that it is a tumor of the mammary gland, so my dog, Piper, will be undergoing surgery next week. There's a 50% chance that it will turn out to be cancer. Of course, we'll be pulling for the other 50%.



I hope everyone finds Peace and contentment as the Holiday season approaches.

Calico

Pegk,

so sorry about your dog. Our cat has a lump on his chest too, since years, Vet says it's "fatty". I hope Pipers tumor is just that! Can they give a dog treatment or would they only let her go? I'm sure  it would not be easy....but lets hope for the best. Our pets are family, we need them.

Thanks for asking about my family.

Mom finished her rads finally and is on Tamoxifen, basically a year after being diagnosed, she seems okay.

My sister was dxed with colon cancerand is awaiting surgery, did neo adjuvant chemo and rads and is very sore and raw and scared.

My daughter's MRI wasn't great, more deterioration, she has the beginning of avascular necrosis, the bone is dying, which is a double whammy since it seems to speed the need for hip replacement. There is a partial replacement called the birmingham hip resurfacing but it has a short pin only in the femur neck. Her femur neck is actually thinning.....so this might not work. This type replacement is good for young and active people if they have the bones to support it.

They want to put her on the osteoporsosis drug 'Boniva' for now and another MRI in three months...We are praying and hoping, it's just not fair.

It's been a ride and we are wondering who is "next".....

God Bless

txred9876

BUMPING US UP ON THE LIST

tinkermax

Bumping

Pegk

Tina and Maxine, thanks for keeping us on the first page. I hope you're both doing okay.



Calico,

I'm glad to hear that your mother is doing well. I'm sure your sister is in good hands. She will appreciate all the encouragement you can give her. One of the most supportive friends I had while I was going through my treatments was a coworker who is a 10 year survivor of colon cancer. Her calm reassuring voice got me through many difficult times.

I'm so sorry to hear about the setbacks that your daughter is experiencing. Do the doctors know what is causing this condition? I hope the Boniva works.

Be well.

linny

I have been posting very little - I was away in New York for 10 days, returned Oct. 31. I'm happy to see how everyone is doing.  Things are fine here - I have an appointment next week with oncologist to discuss going off tamoxifen and on Arimidex.  My leg muscles are often quite sore, I believe its a side effect of tamoxifen, also two years of hot flashes has been really annoying, but they are better in the colder weather.

My sister who had a stroke at the beginning of April (7 1/2 months ago) has slowly made improvement, but its very unlikely she can go home anytime soon.  She is in a wheelchair, and although she has recovered cognitively a great deal, her speech is very impaired by the stroke, she can hardly speak.  Its been a very sad time for me - I feel so bad for her. 

My family is doing well.  Isaac has made wonderful progress with his cochlear implant, and is speaking very nicely.  We're so grateful for his progress.  My grandchildren are a great joy to me, and spending time with them is the best way to forget my cancer, but since they live in New York, I dont see them as much as I'd like.

To the outside world, I appear fine, and am active as usual, however, there are occasional times I feel very fearful of recurrence - I just cant shake the feeling.  Its also a terrible downer to read about some of our posters here who are so unwell. (sorry to be down)

I went to the ballet last week w. my 25 year old daughter - we are not ballet fans generally, but it was a program for Jerome Robbins 100th b'day and there is a new opera/ballet house in Toronto that we wanted to see.  The ballet was wonderful, and the opera house is simply stunning - its called the Four Seasons Centre and was very well received worldwide for its architecture.

Love to all

Linda 

susan_02143

bump du jour!