Starting chemo January 2009?

Hotbolt - We can recover together.  My exchange is schedule for 10/21, you will be coming round the bend just as I am rounding it. It is funny.  I was much more comfortable with my expanders and nippleless breast in the winter than I am now.  I am not disqusted or depressed about my body but I find the feel of my hard breast much more annoying than I did and no longer feel that a smooth look under a t-shirt is worth not having nipples.  I am looking forward to hopefully having some pretty new breast to start the next decade with.  I wish I had a better idea of what recovery will be like.  I don't know if I need my parents to come up and help or how long to schedule myself out of work. 

I find it strange to be living in this body that I no longer fully recognize.  The hair that does not look like me.  The breast that are fake and not like my naturally grown ones and this extra 10-15 pounds that won't go away.  It is not just how it looks but when I touch my body it feels different.  I am someone who was still wearing clothing from 15 years go prior to chemo changing my body shape.  It is so very strange to have my body shape change so much so quickly.  

 Today I just felt like wearing my wig, even though I have been going around with my short but reasonably normal hair for weeks now.  I just felt like being a red head today.  I got at least 3 spontanious complements on the cut from complete strangers.  For once I just thanked them rather than explaining that it was a wig.  

HI Jewels:  We finally got Summer in Northern WI... 80 degrees today and I am loving every minute of it.

Kim: hope your pizza party is a hit!  You'll be doing that for your grandchildren someday!!! Anniversary's are are time to remember good things... your child, your dad - what a cool connection.   And on 9-18, you celebrate - you got through one helluva year and you beat this beast!   And--maybe your oncologist can appeal to your insurance company to pay for genetic testing... worth a try.

Had a visit from a co-worker who found out on Friday there have been changes in her mammogram -- 4cm something "with it's own blood supply".   She is having a ultrasound guided biopsy this coming week.  Like all of us, she is already going down the "worst case scenario" road.  She asked all kinds of questions about cancer, treatment, etc. Told her we would talk more - lots - if that is what she has.   Say a prayer if you will that she doesn't join our "club".  Thanks.

Hi ladies:  Hope you are ready for this because I am sitting on a major pity pot and need to unload.

I just want my life back....Finished rads on Wednesday about three weeks ago now and I practically  ran from the hospital feeling happier than I ever remember being in my entire life. Spent Thurs. Fri Sat and Sun thinking I am getting my life back.  Monday night I awake during the night with pain in left breast.  It is a little red and hot so I assume it is SEs from the rads.  Tuesday a.m. I wake up and it is alittle more painful, red and hot.  Take pain killer so I can go  to school.  Tell my aide if I start slurring my words to send me home ha ha ha.  By Tuesday afternoon when I get out of school I am in major pain.  Call rads doctor and they are gone for the day so they tell me to call in a.m. if not better.  Start running low grade fever on Wednesday.  Dr. has two appts one at 1:45 and one at 4:30. I take 4:30 trying not to miss  too much work.  See Rad dr. she said looks like infection puts me on Keflex. High dose.  Tells me pick up on way home take at least 3 before bed and then every 4 hours six times a day for week come back and see her on Wed. next week.  Meanwhile long labor day weekend was coming up and I was not getting better.

On Friday a.m. I call and say I have seen no results and pain is worse.  Dr. on call tells me not on antibotics long enough and to keep taking. Call if temp gets to 101.5.  No mention of pain level which was getting unbearable. I spend all day Fri. Sept 4th in bed which was my BD   I spend all day Sat. in bed temp is running anywhere from 99.0 to 100.5 going up and down with the tylenol.  

Finally Sunday DH says we need to go hospital.  I do not want to.  I am sick of hospitals, but by noon the pain was so bad I changed my mind lol like I had a choice. ER  was not TOO busy but still waited  for hours.  They ended up admitting me and I was in surgery at 6am Monday morning. Of course it does not occur to me that I was told you can not operate on a radiated breast until dr. comes around to see me and explains that the wound is open can not close it due to infection and most of tissue inside breast at wound cite is dead etc etc etc....Long story short could take nine months to a year for it to heal at that point I will need recon on both breast to get matching set.  I cried and cried ANOTHER YEAR!!!!   God give me strength.

Spent 6 days in hospital. They think I have mersa so they put me on Vancomison (?sp) which is apparently one of the few  antibotics that will touch mersa.  I have an allergic reaction and they have to switch meds.  Infection disease people called in again to determine what antibotic I should be on. Good news cultures show no mersa so switch antibotic again.

Well I am at home now.  On IV antibotics every 8 hours so they put in pic line and my DH has the pleasure of shooting me up with antibotics every 8 hours.  The home nurse comes everyday for this week at least to repack wound and change dressing. See wound doctor on thurs. and who knows what goes on from there.  Like I said I WANT MY LIFE BACK!!!

To top it all off, my liver enzymes (sp?) are high which kept me in hospital extra day because they don't know why.  Could be antibotics I am on.  Dr. said keeping me one more day to check liver enzymes in a.m. and possibly do ultrasound of gallbladder.  Next a.m. liver exzymes still high but they are sending me home anyway with out ultrasound but should follow up on lliver enzymes with onco dr. who may want to do bone scan to check of mets!!!!! Holy SH... That sends me into a tail spin.  Been a hell of a week and all made worse I think by the fact that I was DONE..or so I thought.  I have lost hope for the moment and feel like it will NEVER END and this is my new life and the sooner I accept I will not be getting MY life back the better off I'll be.  Of course DH hates that kind of talk but I can't help how I feel and that is exactly how I feel.

Missing out on the first few weeks of school with my new class and everyone who teaches knows that is important bonding time.  Thinking may be best for children at this point if I just take the year off as I spent most of last school year being unreliable and feeling  that way again.  Not fair to my aides, the subs or the children....Oh by the way NOT FAIR TO ME EITHER if I have to quit. Just don't know what to do. What do you all think?

Well I  warned you to be ready...Bye for now.

Patti

Interesting that you and I were both here spouting off and posting at the same time 16 hours ago.  Sorry to hear of your breakup.  It is always hard to make changes even when we know they are for the best.  Give yourself some time to grieve the loss and then move on.

 Glad to hear healthwise you have been doing well. The year from hell is not over for me either and seems as if it won't be for awhile.

Take care of yourself you deserve the best in life.

Patti

Nancy; sorry for your breakup - take the best of your relationship - hold it close - grieve and take care of yourself.. You made it through cancer treatmetn, you can make it through this.

Jess:  Why won't your dh go for counseling? Have you thought of going without him?

Patti:  mega hugs to you.....   You will get your life back. Give yourself enough time to recover from the last few weeks before you make any decisions about school.   Try to keep your diet balanced with enough protein - maybe try supplements like "Boost" so you have the "tools" to heal.   The antibiotics will work, your tissue will heal...it may not take as long as they say.  Your liver enzymes are likely due to antibiotics and pain medicines and NOT cancer.     You got through bc and it's treatment -  you will get through this too.   Post/vent as much as you need -- we are here for you!   Hope each days gets better ---

Jilly G, I so get that, it was pancreatic, but he fought the worst of it during the time us Jewels were fighting, and will always seem part of it to me

Patti and Nancy just read your posts.  Nothing I can do but send cyber hugs.  Wish I was there to help you more.

hi ladies. Well I'm on week 3 of rads. Its going well. Its a pain going twice a day but nothing I can do. I'm feeling good except I caught a cold. My PT is going well. I've been signed for 4 more sessions and hopefully my arm will be back to normal. I have lab work and an appt. with my onc. next week. Hoping everything is ok. I have no side effects from the clinical study I'm doing, so thats a positive.

I am so sorry to hear about breakups. It couldn't have happened at a worse time. You have to stay strong and take care of yourselves. Hugs to both of you.

All of you, take care and have a good week.

Hi all,

I joined you all a couple of weeks ago-- finished chemo in Feb, rads in May- on arimidex b/c of previous blood clot--- had a lumpectomy with no nodes and clear margins in November 08 at age 48. Have two kids, good job with good insurance, supportive h---- and I have been feeling great-back at the gym, swimming again-- and my hair is wildly curly and thick (it was always thick and straight)

 Everyone on my medical teamgave me an excellent prognosis and that was all I needed during the treatment phase.

However, last week I had a follow-up with my onc and I just got so stressed out before it .... and I have a mammo coming up and a radiation meeting--all followups--- no one expects anything to be wrong-- and it is coming up on a year since dx and surgery.  I totally thought that once it was done, I could be done.... and not think about it too much--and for the most part I don't.  But I am starting to realize that these follow-up meetings are going to be stressful.  At this last one, I couldnt' even go back to work, I just went home---there was no bad news, it was all good-- she did a breast exam--which was how my lump was found--and she found nothing---- 

 Just being back there- in the oncology unit seemed to have an effect on me.  I know that it is a good place for me to be but I have to admit, I had a moment where I thought--- I don't want any more checkups-I don't want to know any more.... I am sure it was fleeting--- but I am hoping I am not crazy and you all have had some of the same thoughts.  

I threw everything they had at this--it was early stage, medium grade and intermdediate oncotype results---- I could not have done more..... do you find that all of your dr visits cause anxiety?  I used to just skip in and skip out.... no more...... 

 I know there are so many people worse off-I met them in chemo and rads--- so I am profoundly grateful for all that I have and my life--- I just was not prepared to be so anxious last week and and now wondering if it will be that way all of the time????

carole

any other cancerversary's coming up??  We need to celebrate being a one year survivor ladies......I see BerkeleyKim is coming up on Sept 18.  I think for me Nov 3rd will be a day of mixed emotions, but I will be happy to call myself a 1 yr survivor  

Brenda - I have not been dealing with lyphodema but a woman at my yoga class yesterday has it in her leg.  Did not show up till years after her surgury.  Scary1  I had a node taken on each side so I can't really favor one side to protect myself. I just have to hope that only one node is not enough to cause a real problem.  If I do have a problem I think I will try seeing this healer near where I live called the Mad Russian (brookline ma).  He does some weird healling thing with his hands and a sneeze like sound, but a friend of mine, who does not believe in anything was cured of smoking by him even though she brought a pack of cigs with her to smoke after her appointment.  She took her mother there for lymphodema and said he touched her mother and the sleeve which had been so tight her flesh was pushing out at the ends, just fell off. 

Tomorrow is my 3 mth post appointment and it has me nervous.  Every little thing seems worrisome now.  October 1st is my "phone call" anniversary and I scheduled myself off from work that day.  I want to reserve a time at my local mikva. It is a ritual bath used by jews.  It is mostly for woman to ritual clean themselves after their periods stop so that they can be with their husbands again, but it is also used for other reasons.  Recently many people have started to use it as a way of purifying themselves after an experience like canser.  I only did it once, before my wedding, but I have been wanting do it in relations to getting passed this bc experience. I just could not decide when was the righ time.  October 1st feels right.  I may fast that day as well, not part of the mikva thing, just a way of spiritually cleasing myself. 

Today I went to art therapy and my piece was much less upbeat then all my others.  I pasted a picture of a kitten in soap suds in the bottom right hand corner.  Then I scribbled angrily with charcol pencil and oil pastels in several angry colors.  Then I pasted hard words over the scribble, like cancer, faults, insignificant, cutting, ect.  Then I add a few foam shapes to give it more depth.  I feel like that kitten and all the bad stuff I have been keeping at bay is just waiting outside my little cave waiting to get me. There were three other people at art therapy.  A young man with cancer of the spine.  A BC survivor in town for an appointment and a woman whose BC spread to her lungs and brain after, I think she said 3 yrs.  She is in treatment again.  Her reality is what was attacking that poor little kitten in my picture. 

My check up went well today. My blood counts and chem labs were all good.  He thinks my tissue is in good shape for my upcoming surgury.  I am scheduled for a follow up chest CT scan just before my surgury to check on some small bumps he had seen in the original scan.  They are likely just some scaring from brochitis or something but he said it is standard to go check them again after treatment.  Normally about a year after the first, but he thought we should do it before my up coming surgury so if there is any change we can not it is not from the surgury.  While I was there I asked him if he thought I should see a doctor about my toe that I jammed hard way back in May and is still hurting.  He wrote me a lab script to to have an x-ray taken.  So I took care of that before leaving the hospital.  I am feeling more relaxed now that the check up is over.  I hope they get easier. 

Eva: check out the recon threads here - there is a ton of info on them. 

Renrel:  Glad to hear your appt. went well.  I am not there yet but I suspect the first followup is the hardest emotionally.

Jess:  I am not suprised by the PTSD diagnose.  It definitely fits with what we have been through. You are in my thoughts and prayers.

You ladies who are dealing with lymphedema have made me feeling guilty about complaining so much about my recent set back.  The lymphedema has got to be the pits to live with every day.  I only had four nodes removed and have not had any of that to deal with and despite how I felt a few days ago I will eventually heal from the recent surgery and the infection will clear up so compared to what you ladies are facing my setback is minor.  I hope you are both feeling better soon.

I have a followup with the wound doctor today so I should know more about what is happening with me.  I still have the pic line and get IV antibotics every 8 hours.  Breast is much less painful. Whether or not wound is healing I am not sure but should find out today.  Not eligible for home nurse visits any more so my DD is changing my dressing daily for me.  It is draining much less than it was so I guess that is good.

Made it to afternoon staff meeting at school yesterday.  Was sure good to get out of house.  Got to see the children from one of my classes and they seemed really glad to see me and remembered me.  I was in school for such a short time I wasn't sure how they would react.  Sure do hope I can get back to school soon.

Gotta run.  Appoinment after appoinment today. Just want to stop by and say I was feeling better and not so down.

Cancerversary date for me is not until November 13th.  Just realized it is a good thing I am not a suspecious person because my five year date is November 13, 2013!!!  

Hope you all have a good day.  Love ya.

Patti

Wow, renrel.  That woman must be very strong.