Starting chemo Sept 05

Hello lovely ladies



Thanks for all the well wishes!



Well I had my ooph/hyst 2 weeks ago now and I am feeling much better. The first week was very rough- a bit of pain and I ended up staying in for 3 nights which was a good thing in the end I suppose. Scott was able to come home for 2 weeks thank God so I am just getting through this week alone with the kids before heading off to New Zealand for a 2 week holiday. I can't wait! I am sure the flight over will be difficult flying alone with the kids but once we are there i can relax!! By the time I get home I should be nicely recovered.



I guess the hardest thing for me is the fact that the doctors STILL won't commit to saying if I had liver mets or not. That is a HUGE thing for me mentally that I struggle with a lot. I received a copy of my report from my surgery and my previous history had "breast cancer with liver metastates" which I didnot want to read! I am seeing a counsellor to help me through this and other cancer related issues which I suppose is helping.



I am so happy to see everyone doing so well on here! I know we have our struggles and worries but as a whole I am pretty darn proud of how we are all getting on.



Love

Leanne

My dear September Sisters,

I have read all of the postings.. but can't respond right now. Life at the susan household has really sucked. My father had open heart surgery 15 days ago to repair a valve. Turns out that my father had a heart defect from birth that only caused issues recently. The surgery was supposed to last 4-5 hours, but once they were in there, they found they had to replace the valve, and repair three others. He was on the heart/lung machine for 7 hours. He is still in ICU, and he isn't doing well. I will head there tomorrow to be with him for the first time.

My mother can't be with him tomorrow because, oh god, my younger sister has been dx'ed with another cancer. She has an oral cancer most common in smokers, but she has never smoked. This is her third cancer. The first at age 28 she should not have survived... the second one was easy... this one is nasty. My internet research indicates that only 20% survive. So tomorrow, I will be with my confused, sick father while my mother and sister are at Dana Farber having their first meeting with her five new doctors.

I am reeling. I alternate between total denial, and being overwhelmed. My poor mother. She has been my sister's rock.. and my father's partner.... and now she is trying to be both.

Please consider sending my family your most positive thoughts as we navigate this hard reality.

The good news now: in spite of my breast pain, the tests found NO mets and no reason for concern. Turns out I had an infection running rampant.

Peg, I leave for the UK on May 20th... but I should be here on the 19th if you want to have breakfast together. Leanne, have a wonderful vacation. Tina, you ROCK!!! Sandra, thank you for the report of your London weekend. have a great trip to Cyprus! Maxine, good to hear your news..... and that is all I can remember. Sorry, can't concentrate. 

Take care all...

*susan* 

I just got back from my yearly check up, and doc found lymph nodes that worry her.  Also worried about pain on my chest and very fast heart rate.  She is thinking it might be damage from Herceptin....  Had tumour markers done, and CT this pm, seeing her tomorrow afternoon for results.  I am sure it is ok, but this little voice still saying what if...  Please think of me tomorrow....

gentle bump... surgery has been scheduled for the 19th. Peg, this means I can't do breakfast with you. I will be sitting at Dana Farber waiting for doctors to tell us how things are going.

Susan, omg so much at once, prayers and love for you and your family. When you need us most close your eyes feel your September sisters giving you (((hugs))). With the different time zones all around the world someone is on the job for you 24/7 just think of us and we will be there!

for your sister something that helped me through diagnosis.

http://www.thesurvivormovie.com/

The first time I watched it I cried, now going back and watching it, shows me how true it is.

Maxine, good nothing serious bad not any better, how frustrated you must be. love and healing to you.

Leizel prayers for good test results hope we hear from you soon.

Peg have a good trip hope your fund raising cup runneth over!

leanne wow you are becoming quite the globe trotter, Enjoy!

As for me I am off to the Dr's tomorrow as I have some mild soreness in the upper inside quarter of my right breast.(surgery side) I can't feel a lump or anything but it is a similar sort of pain to the first time. will get back to you as soon as I know anything.

best wishes to all

Nicole

Hi all

Seen Dr off for an ultra sound tomorrow.

chat then

Nicole

Hi my September sisters,

I am so sorry to see some of you worried!!!!!!

Maxine,

so happy to see you!!! Glad nothing bad was found and sad, that you are still hanging without knowing something definite!

Leanne,

glad to see you well after ooph. Hope you have a blast on your trip!!

Liezel,

any news on the last exam? Hope you are well!!! A friend of mine had nodules in the lining and it was radiation damage.....what stress to go through tests.

Tina,

can't imgagine lymph edema! Sorry it rears it's ugly head again.

Nicole,

what did you find out? Hopefully only good things like NED!

Susan,

it is time to stop calling "Here" when they pass out cancer diagnosis, please tell your family!

I am so sorry to hear about what's going on. I hope that your mom has time to be good to herself as well. I am glad you are all drawing strength from each other. Long plan for your sister and surely for your dad.

Peg,

you are an inspiration!!

As for family,

my daughter gets a hip replacement in June, I am nervous as hell and I eat way to much chocolate to keep me calm.....she is ready and I am scared......

I think I am fine, my 'breasts' itch like hell lately, underarm pains (can't feel lumps), my 'bad' breast is a bid lumpy and I am trying so hard not to think about 'it'. But some of you have pains too, that is somewhat comforting.

I am aware of my bones yet I think it is the bone loss I hope. I did not investigate the last interpretation of my PET with a new old spot...to scared........and I'd rather not read to much on this site right now, I am still reeling about the loss of Shepgirl, thought it could not get her, she was so determined.....I am afraid that it is all hopeless so I stay away for the moment which is hard too.

I hope to hear good things about the remaining scans you are waiting for!

Susan, what good news about your dad!  Good luck with your sister...  HAve a good trip to Scotland as well!

I have had a call from my onc.  The radiologists have compared the scans of the last two years.  The nodules was there, and has not changed or multiplied at all.  She said that it looks like breast cancer to her, but the fact that it has not changed, and the tumour markers are normal means that they are stable, and we just have to keep an eye on them.  She wants to do a scan every 6 months now. 

I am relieved, but also very scared.  It scares me to know it is there, and we are not doing anything about it.  I have tried doing some research on mets in lining of lungs but can't seem to find much.  I'll appreciate it if any of you have any wisdom.

I hope you all keep well.  Think of you often.

Liezel

Liezel,

are these the medistinal nodes? Those were a bit larger in my friends scans too and believed from radiation. She had a PET scan and she's okay.

Did they recommend a PET for you or maybe give you the size of them?

Remember I was followed for a lung nodule for two years, stable and believed benign. And then they saw a spot on my femur, was there all along too, checked back. Nobody worries it's cancer....just me.....

Get a PET if you can. I keep you in my thoughts!!!!

Susan,

yayyy for your dad!!! It's going to be a long road but your family is tough as proven!!!!

Good luck to your sister.

Enjoy your trip, you are right by going!!

God Bless

Leizel, I would insist on more test all the wondering would do my head in...

Susan see what good vibes from your September Sisters can do, hope your dad has a speedy recovery. Best wishes to your sister.

Peg encouragement for Boston.

As for me I got my ultrasound report back that show a mass 2mm X 3 mm  in the right breast (bad one) that is most likely a benign fibroid and a small cyst in the left.

"Most likely" is not good enough for me so I am seeing my surgeon on Monday and requesting a biopsy to make sure.

So doesn't look to bad

Love to all

Nicole

Hi all

Crikey, so much happening on Monday.  Nicole I will be thinking of you as I will you for you Susan whilst you support your sister during this dreadful time - good news that your Dad is improving.  Monday is a nice day (I think) for me - my daughter will be marrying at 12 noon in Cyprus.  I am all packed and ready to fly early Saturday morning. 

Liezel, yes ask for more tests - you have the right to put your mind at rest.  I must be due for my check-up soon - must find out.

I feel well; my reconstruction date is scheduled for 27 June - perhaps your daughter and I can send each other good healing vibes hey Calico - such a worry for you and it must take its toll on you seeing your daughter suffer so.

I am walking more Peg, still not in your league, yet!  Enjoy supporting the Boston walkers, I am sure you will be well appreciated.

Well it is 12.15 an here in the UK - way, way past my bedtime.  I have been catching up on things so I can leave things in order whilst I am away.

Speak after 28 May - hugs to you all.

Sandra from the UK

Leizel,

I would make sure you push for whatever level makes YOU comfortable. From the very begining I did not like the "brush" offs and kept pushing through 4 doctors to get a proper diagnosis because I knew something was not right. I am not saying this to add anxiety but sometime we know because it is our bodies.

I have had a miracle!

I have had severe nerve pain (mainly in my legs) since I had Taxol in 2006 (finished 6/06).  We have went to a new chuch the last few weeks and on  Mother's day they did special prayers at the end for anyone who had physical ailments. Well I figured I needed all the help I could get! There were three woman whom prayed over my legs (one of them a 2 time breast cancer survivor herself). Well I really did not feel anything different..... it was not like something instant ...but...afterward we went to eat because the service lasted about 3-3.5 hours and we were startving. About the time we were eating lunch it would have been time to take my next round of morphine for my legs (in order to keep the pain under control). Well..... I was not feeling any pain so I did not take any morphine,...... and this is now my 9th day pain free (from the neurapathy in my legs)! Never underestimate the power of prayer (no matter which religion you are).

I am still having some swelling from the lymphadema that is causing some arm pain however. I have been going to therapy for 3 weeks already and they did a demo of this machine called a flexitouch. It was a wonderful machine and it works to get the fluid off my chest wall, underarm and back area. I have had trouble with this since surgery in 12/05 (and probably always will). The machine costs 10,000 or so, but my insurance should pay for it out of medical need.

As always I am thinking of each and every one of you and sending prayers your way!

Tina

Liezel,

I don't care if I have to do it for life. At this point I have heard once you get le you have it for life anyway. The relief it gave was wonderful!

I sure hope they get things straightened out! Hopefully, it is nothing and the next 6 months fly by so you can get some peace of mind,

tina

glad it went great sandra!

Hi again



Just a quick update from me while I am here!



I am recovering well from my hyst & ooph although managed to get an umbilical hernia which is slowly resolving itself. I think it was a warning from my body that I am not as recovered as I thought!



New Zealand was lovely, I have put some photos up on my Facebook page for those of you that are members. It wasn't as relaxing as I had hoped- entertaining to active boys 24/7 for 2 weeks non stop is exhausting! I was rather glad to get them home and back into school.



We still have Toben in with the child psych. Somedays I think it helps others not so much. I toy with the idea of trying him on medication but have managed to resist so far. Liezel how are you going with your son?



Riley turns 3 today! I can't believe it. It must mean we are coming up to 3 yrs since dx. Wow.



I have to get these monkeys to school



love you all

xoxoxo