first chemo done

jill323

Debbie -

Hi... This is one time having this computer keyboard frustrates me.   I wish I could support you better than what words on a screen can do.

You know, in reading your words, it reminded me of a time that I had post surgery when I was really low.  Just pissed off at my body and the world in general.   There was not a lot any one could do but let me wallow in it a bit.   Believe it or not, I was grateful for that time and those that just listened.   So, if you need that, let me know.   My ears and eyes still work pretty well (and I know where you have been).     I did eventually pull myself out of it.   (But, do NOT over do it with that arm - I know too many ladies that did and later regretted it.  I know that does not help you any, but your arm and strength WILL come back if you let it).  

As for the oncology appointment - yes, this first one will likely be long.   You need to be prepared to discuss options with your doc.   Remember that long list of questions ?  Get it out.   Make sure you get them answered to your satisfaction.   Also, don't be surprised if the next step for you is a long list of tests they will be sending you to baseline you in preparation for chemo (I know, not what you wanted to hear).   But, given all the health things you mention, probably not a bad idea. 

In the meantime, please let us know how it goes with the docs.   As far as chemo goes, not sure what your NP is saying in terms of it being "symptom free", but gotta admit the meds they have these days make it "manageable" - at least so far.    

I still feel like hell tonight (and getting a little concerned about going to work tomorrow), but I will survive.

Jill

sweeeeetpam

Hi Everyone,

    I am having chemo Before my surgery............the first time I sat in that room with all those charis I just cryed a strange lady came over and siad oh you need a HUG!!!!!!!

       I am on A/c   and I am almost afraid to say this....I have not had one single problem, as week after my first treatment I walked in a diabetes walk with my school four miles............ they gave me two nausea medicine that worked great and my shot the second day same thing, it has been 3 weeks and I go again t9omorrow I hope I just did not jinx myself.

                        This is a wonderful place to talk, but always remember when people are saying they are having a hard time, don't let it scare you, it did me a first, the prot site scared the ------- out of me that I did not want to go.

                   Again I had no problem with that except being stupid and cleaning the house for an hour when I got home and almost killed myself!!!!!!!!! Stupid Stupid!!!

                      I am scared about my surgery, I think I have decided togo for a mast.........  Have a wonderful day everyone Sweet Pam

          

kristifromsandiego

Hello Ladies,

I am so very very tired.  I am going to call the oncologist regarding my exhaustion.  I have not slept more than 2 hours straight since last Wednesday.  My mind is going crazy, I even prayed in bed that God would give me the strength to turn my mind off.  The ambien does not work worth beans.  I think I wake up in pain so I am going to talk to him about that also.

What does the Clairton do?  I think I might try a motrin PM tonight, maybe that would work. My parents flew in to town (age82 and 85) they are obviously worried.  I am trying to be strong but am so tired.  I am calling a counselor tomorrow to maybe have them tell me why I cannot shut my mind off.

Thank you for all your help.  Kristi , 5 more chemos to go, how am I going to be able to do it.

bee5467

kristi --

When I had my chemo, they had me take this pill to "speed up the chemo absorption."  I took 4 the day before 4 the day of, and 4 the day after.  So four days, I got no sleep.  My mind was racing, and I endlessly made lists, cleaned out closets, talked all the time.  I was exhausted.  Then my daughter informed me that those pills were SPEED.  AFter 2 CHEMOS, I finally figured out the no sleep around chemo times.  I told the Dr. if he didn't lessen the script, my husband was going to ask for a divorce.  I was NUTS.   He made it 1 pill a day, and I was much better, and could even sleep.  Does your Dr. have you one these pills???

barbjdiehl

Hi, Im new to this board, Ive been looking all over the net, but sometimes I just have to close the windows because the more I see, the more scared I get.  I am 52, have IDC stage 3B in my right breast, also nodes under my arm.  My treatment will be 6 TAC chemos every 3 weeks, followed by double masectomy and then radiation, also recommending my ovaries be removed.

I go today for my MUGA test and tomorrow for the port to be put in.  My first chemo is scheduled for Dec 1st.  I asked it be put off til then because I am going to see my parents over Thanksgiving, my father took the news very hard, he is 83 and it took him back to when my mother was diagnosed with ovarian cancer, she died at 44.  So I feel it necessary to see him and my step mother before I start getting sick from chemo.  I live in WI, they live in NC.

I have never been so scared in my life.  I cry frequently.  I dont know if I will stay this way or it will lessen when I actually start treatment. 

My works says not to worry about my job, but yet when I told my boss my first chemo is scheduled on a Monday she made me feel quilty becase she thought I would have them on maybe a Thurs and be back at work by Sunday, I work Sun-Wed in Johnson Controls Computer room.  My husband feels like I should just stay home during the chemo and not worry about working,  Financially it would kill us, but he doesnt care, he wants to take care of me and he doesnt want to worry about me going to work and getting sick from being around so many people, he is afraid I will end up in the hospital. 

I dont know how I will feel, how sick will I be, how much energy will I have.  I just dont know, so when people say things like "well my niece worked the whole way thru her chemo" it makes me feel like they will judge me based on other peoples experiences.  I dont know how I will feel.

Im just scared.  Im already tired and my right arm hurts all the time from the nodes, my first symtoms were in my arm.  Then all of a sudden, and I mean this literally, almost overnight a huge lump appeared on top of my right breast.  Its about 3 inches by 1 1/2 inches.  I dont know how it came so quickly but it did.  I would have noticed it, not to mention my husband.

The best guess anyone has is that in about August I started taking over the counter Estroven because I started having hot flashes, so some think maybe that caused the cancer to come to the surface from under my arm and manifest itself in this huge lump that I have now that no one could ever miss. 

jill323

Kristi -

Argh.   Welcome back.  I am really worried about you.  I saw your post above and saw your other post on the other thread.  

I agree with what everyone is saying.  It is time you take the whole package (i.e. you) back to see your doc and quickly.   You and Cristl are both suffering from the same sleeplessness thing.  If you are taking medicine like Bee suggests, perhaps your body reacts to them differently than others.   Everybody does react differently.   I am also very happy you are seeing a counselor.  I have been reading up on this and found that a large number of people undergoing chemo treatment find themselves on anti-depressants during treatment.   It makes sense if you think about it.  Symptoms of depression are caused by chemical imbalance in the body and they are chemically imbalancing us like crazy right now with all these drugs.  Also, sleeplessness is the major symptom that usually triggers attention to it.    For me, I also have trouble with "brain chatter" (as I call it).    My doc prescribed Xanax (which is technically anti-anxiety).    That helps me turn off the mind noise so I could sleep.     But, in any case, I think you need to sit down with your doc and review your whole case.   I really hate to see you suffering like this. 

For the constipation, although I have not had to use it, my doc recommended Miralax if there was a problem with that.   That is the same stuff they give you before colonoscopies.    If you have ever had a colonoscopy, you know how effective that stuff is.

Finally, you asked about Claritin.  That is a non-drowy anti-histamine and won't help you with the sleep thing.  It is more likely to prevent cold/allergy like symptoms associated with white cell increase.  

Please take care and let us know where you come out.   Thinking about you here. 

Jill

jill323

Barb - Hi and welcome.  I see you chose our little group for your first post.  Well, you couldn't have chosen a better group of ladies to support you through this.

I know this is very scary, annoying, maddening, frustrating... you name it.    That said, one of the things that struck me in our note was you trying to figure out how this could have happened.  Well, you will simply make yourself crazy if you continue down that path.   There is no way of knowing, and to continue to try to find a reason simply "blames the victim".   You did nothing wrong or anything to deserve this.  

The part about your boss makes me a little angry.   Everybody reacts differently to this treatment, and there is no pat answer.   There are some things you can do to maneuver through the working world.  But, your husband is right....  take care of you FIRST.   

I need to take off for work now.  Come back a little later and let us know how your scans went.  We can likely give you some tips on what is going to happen next, how to prepare, and most importantly, support you through this.    

Jill

kristifromsandiego

jill,

thank you so much for being there. i am going to take your advise and see if i can see the doctor today.  i cannot stop crying.  i have been on ambien for over a month and maybe that is making me depressed,  i tried a different sleeping pill, sonata, and a anti anxiety pill last night slept from 10 ;30 to 2, my longest yet, my intestines woke screaming at me,  i think the ambien can make you depressed so i hope that is it, but i still need to figure out sleep.    thought i also will call a counselor because there is no way i can handle treatment 2 in 2 weeks.

thank you so much for being there, i am so sad and tired, i do not know where the old me has gone  kristi

barbjdiehl

Jill,

Thank you for replying back.  I will come back, I dont know if I will get any results back for the bone scan or CAT scan I had done last Thur, my oncologist is out til tomorrow.  Today I do the MUGA scan and tomorrow the port, so maybe by Wed.  

But it makes me feel good to just 'talk'.

People are truly supportive, but there is something different about chatting online, its like talking to someone and journaling at the same time.  Im not really looking for a cause for the cancer in so much as I really just want to be reassured that there is no way I could have missed this bump for so long? 

Barb 

Debbie1218

Hi Everyone,

It's nice to see some newcomers!! Welcome all. This is a great, extremely supportive site- I have written about what my dx is, have complained, hopefully been at least a little bit supportave of others and not too self absorbed, and talked about my temper tantrum. I'm still angry, but am not going to over do it, as I don't want issues later on. Just wish it wasn't my right arm.

Barb, it is possible to have that lump pop up overnight. At least I know mine did. I had one under my arm, I know it wasn't there, I would have noticed it in the shower or when applying antiperspirant. One day all was ok, the next day I was rolling over a mountain- at least it felt like it. Ended up being a malignant lymph node, and after many tests found to be connected to a small breast tumor. It's like one day my life was fine, the next day it was changed forever. I didn't think I would ever stop crying. I was still crying in the operating room after they gave me Versed. Now I cry before anything new is happening. Cried before the radiation onc visit. Cried last night and am ready to cry now because I see the medical onc today.

I'm very lucky- I have a manager that wants me to take off and stay off until all my treatments are done. He says my health comes first, and he wants me back 100%, not on and off and feeling bad and being tired, or having any type of pain. It's crazy to me. I've never had a manager like this. 

Kristi- please let us know what the doctor says- You sound so sad, and miserable. I'm glad you are going to call him, and see a counselor. Extra prayers for you. 2 weeks is a long time, and you just may surprise yourself at how different you feel. Here I am talking- and haven't even had my first yet- but I truely am hoping you feel better really soon.

Jill- did you make it to work today? If so- I just don't know how- maybe that extra few years younger is it- I feel tired just after the doc visit this morning- he aspirated some fluid, said I have an axillary web, and to massage it, or go to therapy, pain on chest wall is nerve pain from the mastectomy and will go away. He was so kind. Didn't make me feel like an idiot at all.

Pam- wow- you walked 4 miles? Heck, I couldn't do that before my surgery My hat is off to you. I hope all continues to go smoothly for you. Please let us know. 

I'll let you know what the med onc says this afternoon.I hope not too many tests...it's like I have the port- and just want to get this first one done to know how I'm going to react to all of this.

Take care all of you,

Debbie 

jill323

Hello Ladies !

Debbie - I really love your posts.  They are so expressive.   I get the feeling that you write like you talk.  It always feels so genuine.    Glad you got some peace over your concerns about the post surgery stuff.   Now... anxiously awaiting the outcome of your oncology appointment.  

Kristi - I know the old you is still in there - just being overwhelmed by all the stuff going on in and around you.   I am soooooo  relieved you are getting that appointment going.    It doesn't take a brain surgeon to realize you are suffering.   Not sleeping can really complicate matters horribly.  I am surprised, in fact, you lasted this long.   Let us know where you come out.

BTW, I have heard separately from Cristl.  I won't steal her thunder, but she is also getting the sleep thing checked out.  But, other than that she seems to be doing great !   I will let her post to tell her story, though,  if she wants to. 

Barb - I liked your thought about how these boards are kind of like journaling and talking at the same time.  Never thought about it that way, but I guess you are right.   You can probably tell from my earlier posts that I can get a little philosophical at times.  So, perhaps that was the journal angle coming out !   Also, a shared experience can really bring people together.  We're in this together whether we want to be or not !

Anyway, I think I now get what you are saying about the "discovery" of your lump.  Do you know yet (assuming from a biopsy) whether your tumor is ER and/or PR positive ?    Because they are recommending ovary removal, I suspect it is.   So...   If the tumor was being fed by female hormones, it is possible the hormone replacement may have helped it grow.  I have seen this in some other ladies who have been on HRT and even some women who were pregnant at the time of discovering their lumps.   I know another lady who was pregnant at the time of her discovery and the darn thing showed up and nearly doubled in size in a week because she was awash in female hormones at the time.    Also sounds like you have a kindred spirit in Debbie on this.   Just rest assured, that you do have something in common with a lot of other ladies.  

 As for me.. If I wrote a book, it would be titled "There was NO lump".   Mine was found via screening mammogram in the form of "calcifications" - and I was feeling just great before my world got turned upside down.    When the doctor called me to give me the diagnosis from my biopsy, I actually tried to talk him out of it (no kidding).   He said it was the first time he ever had a patient try to negotiate her way out of a diagnosis.  I simply didn't believe what he was telling me.  There was NO lump.  So.. you can see this shows up in a lot of different ways. 

As for what you are going though... take it one step at a time.    Get through all the screening first.  Let us know when you are going to start chemo.  Just realize that everyone is a little different.  To your point about people judging how you handle chemo based on others - the heck with them.    There are no points for "handling chemo" better than someone else.  This is not a contest or a competition.  We simply wish the smoothest course for everyone, but will be there for you when things don't go so smooth at times.   While everyone is different, there are some common side effects and tips.    And.. as  you can see... we will also get after you if we think you should take action - all because we care.  A victory for one of us is victory for all of us. 

One other thought, and forgive me if you thought of it, since you appears to work in computers, can you arrange an at home work arrangement while you under go chemo ?   That should help at least alleviate your husband's fears in terms of people exposure.

Finally, to Debbie's question - I did get up and go to work.... and then bottomed out about noon.  I just started fading really fast.  Could almost feel the energy zapping out of me.    So... I came home, sat on my bed with the dog on my feet and the computer in my lap.   My port has been really stingy the last few days as well.  Called the doc on that (felt like a wimp).   Not expecting anything major, but just checking to make sure.  I have a full day on my calendar tomorrow.  So, really hope that I am more "up".

Jill

Mocity

Hi Ladies,

I was away from my computer over the weekend.  Last time I posted I had about 2-3 hours of sleep.  I have gotten more sleep and actually had a very good weekend.  I actually went to a bday dinner, wedding out of town and enjoyed it all.  I was tired, I was achy, etc. but I thought that I am not going to let this stuff take away precious times with family and friends.  There will be times it will (and it has) however I am going to fight it too.  I felt pretty good this morning but now am tired after a full day at the office.

On the sleep front.... I have an appt with the psychologist that happens to be an expert with sleep disorders.  My Onc office set it up after me telling them how tired I am.  I have never been a good sleeper so I am actually kind of excited about this appt.  HA!

I am so anxious about my freaking hair right now.  They told me it would start coming out this week and next.  I had 3 inches cut off on Friday hoping that would help a little.  I have my wig ready to go... but I don't want to be bald.  I know it is coming but it still isn't any fun.  The anticipation of each step is one of the hardest things.

BUT I ate good food this weekend, drank good wine, drank some cold beers, listened to live music, laughed, danced and spent time with people important to me.  Those times are what this fight is for I guess, well I know.

I will post tomorrow after getting some information about the sleep problems.

Take care, Cristl

Mocity

Jill - I will hope you have a good night and "up" tomorrow for your full day!

Kristi - I hope you have a wonderful peaceful night of sleep!

Debbie - For me the anticipation of that first chemo was horrible.  The actual experience wasn't nearly as bad as i had built it up in my head.  One step closer to getting it over with is taking the first steps. 

kristifromsandiego

Debbie - Welcome!  I had all the same emotions you had.  I kind of wanted to get it over so I know what to expect.  My sole bit of advise is to get a laxative "that works" before you start!  It makes a world of difference. Also, be prepared for some sleeplessness.  But everyone is different and there is no everyday chemo.

Cristl, Wow it sounds like you were a normal person this weekend.  I am so happy for you.  I would be very interested in hearing about the sleep solutions. I also had my hair cut pretty short.  I gave the scissors to my 16 years old daughter and told her to have fun.  She did a great job.  I am very proud of her.  My hair will also be coming out in the next 7 days.  I have hats and a wig but I know that it will be traumatic.

Jill, So happy that you at least made the effort to go to work.  That is a big deal.  I hope the port calms down.  I don't have one so can't give you any advise.

I spoke with my oncologist and am taking miralax the miracle drug for constipation and am going to try temazepam to sleep.  Oh how I hope to sleep.

Something that one of my friends tryed to help me understand was.......I use to exercise 4 days a week, I use to garden, I use to drink wine.....all these are stress relievers.......now I do not do any of these, plus my stress has triple in size.  So we need to understand this and realize that times are different now but they will return some day to normal.

Thank you all for being there  Kristi  I am going to bed!

SoCalLisa

Hi Krisit from San Diego

Just wanted you to be sure to check out the Get Together thread here for our San Diego group..we get together about once a month...very informal just a lunch bunch really but we are all happy for the  company and companionship..

 Hugs,

SoCalLisa

Debbie1218

HI there-

Had a very informative meeting with an awesome medical oncologist. He was great. Explained everything in great detail after going thru my chart event by event. Attention completly on me and my husband. He's sending me first for a cardiac echo and brain scan, (the family jokes should be coming in later today LOL), he's referring me to someone for my numb foot (YEA!!!), and is encouraging me to be in a clinical trial for Avastin. Phase three, 50 % get the drug, 50% a placebo. I'm hoping I get the drug. My plan of care is: Adriamycin and Cytoxan every 2 weeks x 4; then Taxol every week x 12; Then the radiation and then Arimidex x 5 years. As I recall I am on an excellerated regimen. He does not want me to work. (I did not argue that at all).  But, if I feel ok, I know I always have the option according to my boss.  

I was teary eyed in the waiting room, then more so when we went into the room where all of the treatments take place. They wanted to flush my port and take some blood. The nurses were wonderful. When talking about the medicines, both the doc and the nurse said I had really beautiful hair- and not to worry- it will come back- maybe they thought that was why I was crying- it looks frosted or highlighted, but isn't. Just lucky where God placed the gray . Haven't got to the point of crying about that. My husband said he just knows if it's something new- I'm going to cry and he has accepted that. I'm so lucky to have him. He came home and fixed dinner, and cleaned up, and lazy me- I fell asleep. You are so right Christl. It's the anticipation of these "firsts". Once they are done, I seem to be ok. But my gosh there have been a lot of firsts! Many boxes of kleenix worth of firsts.

Have also decided to meet with the physical therapist regarding the fatigue- to try and head it off, or deal with it as it comes. Plus, I have an appointment the end of the month about how to put on makeup when I have no hair...and since I don't leave the house without foundation- have that Irish red nose to hide, I definitely need to know where to stop the foundation, now just how high up my unending forehead do I go with this ha? Maybe it's time for some botox also???? Or at least very very low brimed hats. Bangs have always been my best asset for hiding that which I prefer the world not to view ...

Jill- I'm glad you were able to come home. Remember- you first- work second. And I don't know how many times I have felt like a wimp over asking something- I've decided this is all new- so I'm just going to be a wimp at times. And thats just the way it will have to be. 

Kristi- So anxiously waiting to see if the mirilax and temazepam worked for you. Hoping so very much that it is, or has. And it sounds like there are some local new friends for you to meet! How awesome is that!  

So- that was my afternoon yesterday- today will be a day of test scheduling- does she really have a brain and a heart LOL...like something out of Wizard of Oz....

Hang in there my friends, and please keep us all informed on how you are doing. We miss you and worry when we don't hear from you.

I also have a huge favor to ask- and feel free not to do this if you feel uncomfortable, but I would really appreciate it if you would all send me your address - as I think you can send it to me privately.

Hugs to all,

Debbie  

jill323

Good morning Ladies !

Wow... Sounds like yesterday was a really good day for everyone.  

Kristi - I am really relieved that you got the help you needed.   I am hoping you are snoring away right now.   I am only familiar with the Miralax via the colonoscopy experience and know that it can be (ahem) really effective.   Glad it is working for you.  Let us know how the sleeping thing goes.  

Also, your friend's point about the change in habit was a good one - one reason I am jealous of Cristl's week-end (you go, girl!).   Guess it pays to get back into a "routine" as quick as possible.  As for me, I do like a good glass of wine, and my doc says that as soon as I feel up to it, having a glass with dinner is just fine and in fact, recommended (maybe for the reasons you mention).  

I also see the invitation to the informal So. Cal group - Don't know how it is with that group, but I LOVE going to my support group on Monday nights.   It is sponsored by the Wellness Center here and completely free.  At first I was a little hesitant - thinking a bunch of ladies sitting around a room talking about cancer.   But, I was wrong.  It is great and I look forward to connecting with them.   We laugh and have a good time and are there for each other.   I have made connections there that will last a life time.   So....  if it is anything like that, I highly recommend it.   It might be just what you need right now.

Debbie - A good oncologist makes all the difference in the world.  Sounds like quite a contrast from the radiology oncologist.   It looks like you made some very good decisions.  Also, your husband sounds like an absolute angel.    That can make such a big difference.  I am just about ready to nominate mine for saint hood here as well.  I love all the "little things" you are doing to prepare youself.  Some ladies in my support group also went to a class in regard to make up when your hair has gone and loved it.  Also a good excuse to buy "dangly" earrrings ! Also, I am sure that scan will find not only a big brain, but a huge heart.   I will send you my address, only if you promise to do the same.  

As for me... trying the work thing again today.  I have a couple of meetings with some big wigs and a training - in which I am the trainer.   Kind of hard to blow that last one one off.   Think I need to work with my assistant on this scheduling thing.    Will probably come home and crash tonight.

Hope everyone is doing well today.

Jill

Debbie1218

Hi Jill,

Yes, I'll send you mine also . There is also a support group here. There is a whole Women's Center, where anything and everything for women is done- including cancer treatment. So- will also be checking out the support groups. That way I have 2 in addition to family, and one can never have too many areas of support during this- something I am slowly finding out. Things are becomming less in the third person now- and more personal- does that make sense? It's all so such a strange experience, life altering in so many ways. If I could pop up and do the training for you I would- whats the topic?

I pray you all have the best day possible,

Debbie 

barbjdiehl

Hi, I wish I could work from home and yes the technology is there to make it possible but when Ive inquired about it they say "no" that we are obligated to provide 24/7 ONSITE coverage.

No one ever said anything to me about being HER positive or negative.  I dont know.

Yesterday I went for the MUGA, it was a bad day for me, I had been up since 5:30 the evening before because I work nights, so I had worked from 8-8 in the morning and they stayed up for the 1:00 MUGA, my sons were texting me and I just was so sad, I sat there and cried.  Nothing hurt, it was just a down day for me.

Today I go in for the port, first they were going to do it with Versed, but now have decided to put me all the way under for the procedure, not sure why.  But I think I would rather be knocked out.

Tomorrow was supposed to be my first day on daylight hours but I dont think I will make it, Im not due to be released from the hospital til 'early evening' and cant see myself waking up tomorrow at 5:30 AM and working.  So I have wrote my boss a letter, but no reply.

My sister is going with me today.  I swear when I took my shower, I think the lump is getting bigger by the day, my breast certainly looks bigger.  Mine is about 2 1/2 inches long and maybe 1 inch wide, its pretty huge.  7 centimeters or whatever measurement they use in the doctors office, I remember them saying that.  Not to mention I can feel it.  I hope not starting chemo til 12/1 does anything bad, I feel the need to get this trip in to my parents before I get sick from the chemo, all the stuff, the hair, everything, I feel it would upset my dad to see me that way, so I feel this is important.  He is 83 and like I said my mother died from ovarian cancer, it took him back to that time.  So he is 83 and my step mom is 80, I need to see them while I still look somewhat normal.

Well I have to get ready for the hospital.

I will be back tonight.

take care all

Barb 

Debbie1218

Hi Barb,

Just to let you know- I also delayed further tests, etc, by 10 days after having my lymph node removed - it was the size of an egg. I felt very strongly that I needed to go see my grandaughter on her 6th birthday - I didn't want to go later and have her remember me being sick, without hair, tired, etc. The doctor told me a week - 10 days wouldn't make a difference- but since I already had my lymph node removed, all I had to worry about was where was my primary site, and was it spreading. At that point it was still considered an unknown primary site, and I was a wreck. If I wasn't around my grandaughter all I did is cry. (That has improved a bit)

But it was important to me to do what I did. So, follow your heart, and don't look back. I'm not sorry for what I did, and I would do it again in a heartbeat.

Please remember to take care of you. And your husband sounds like a gem, just like mine.

My prayers are with you,

Debbie

jill323

Well, all -

I "officially" over did it today.   I know, I know... it is my own damn fault.   Just want to complain about it for a bit.  I feel terrible tonight.   Where do I start ?

1) Got these darn itchy bumps on my scalp.  Nearly made me crazy today.   Came home, took a shower and used some medicated shampoo.  That felt a little better.

2) Still got tingly hands/feet.

3) Strangely, my knees are killing me.   Took my breath away on stairs.  I feel like an old lady.   Looks like a 2 Vicoden night. 

4) Energy left me to the point where I felt woozy later in the day.  Was nauseous by the end of the day.   Luckily hubby made me dinner and made me eat.   If not, I would not have eaten.  Too tired. 

5) No fewer than 5 people today told me I looked "peaked" (that was the word - were they passing this word around or what?), which is analogous to saying, "you look like hell".   

OK.. That felt better.  Done now.   The upside... well, I nailed the training I did.  Dangerous to get me in front of a group of people and give me free reign to talk.  Rose to the occasion and felt like the group enjoyed it.  Got great questions and more importantly, they laughed at all my jokes ! The topic, Debbie ?  Well.. .that is a hard one to explain.  I basically gave a training on how to understand insights/needs from consumers and translate those into product designs and technical specifications.  About the easiest way I can explain that, and it still probably does not make sense.   But, who knows, Debbie ?  Maybe you would do a better job !  I have, without a doubt, one of the strangest jobs in the world - but it is great.   I love what I do.   Anyway, already put my group on notice that if I don't feel better tomorrow, I will work from home.  

Debbie - I got your information.  Thanks !   As for your question about getting things getting out of the "third person" and getting more personal - yes, that made perfect sense to me.   Looking back on it now, we really do go through the "five stages" with this.   I got to "bargaining" real quick given I tried to negotiate my way out of the diagnosis.       And I was mired in "anger" for quite a while.  Not sure about you all, but I don't cry when I am upset.  I cry when I am angry.  But, after that, I eventually got to begruding acceptance in that my focus changed on doing what I had to do to get better and reduce the odds of it coming back.   So... does that mean going from third to first person for you ?  Perhaps.  At least that is how I took it.   

Barb - You do what you have to on your terms for you and your family, and like Debbie said - don't look back.  I know you won't get this post until morning.   I also did the twilight sedation for the port - it is relatively easy to bounce back from.    In addition, I find myself pissed at your employer.   Unbelievable.  What hours you work !   Please take care.. Remember... YOU first.   Also... you need to ask for a copy of your pathology report.   Must, must, must!!!    I am finding thorugh this process that being your own advocate is very critical, otherwise you will get lost in the system.   Don't worry if you don't understand it.  There are plenty of ladies here that can help you understand what it says and what questions you should ask as a result.

Kristi - Any sleep ? (Hope, hope, hope).

Jill

kristifromsandiego

Hello all my dear friends. I AM HAPPPPPPPPY, Oh my gosh sleep is a wonderful thing.  I slept for 5 hours straight. It was the best sleep I have had in 6 nights. And I dreamed.  I haven't dreamed for weeks.  I don't care if it was chemically induced, I will take it any time.  Because of sleep deprivation and my mental status I had not driven till today.  Today I went to the nursery and bought seed potatoes for my winter garden.  My 85 and 82 year old parents are visiting from San Francisco, so my Dad took the initiative to plant the potatoes (very cute of him).  I also bought paper whites..........and if I could buy each one of you some I would.  You put them in a pot filled with rocks and water and everyday you can see growth on them.  It sounds kind of corny but I feel these plants represent life and the change of season.  They will bloom a little bit everyday and by the time they are wilting chemo, at least should be over.

I had to laugh at Jill's post, it was sad that you over did but so like all of us.  It is hard not to be normal.  I hope you relax and don't go to work tomorrow.

Barb, I also was worried about how my parents would take it, but you know they need to see you.  Could you imagine if the table were turned and you couldn't see your Dad.  Even at an old age they are still your parents, they love you hair or no hair.  I still have my hair, but at least that's what they say.

Debbie my diagnosis is just about the same as yours, I am on TAC every three weeks for 6 weeks, so it is interesting why they are different, I do not know enough to know.  What is Avistan?  I am on all the same drug plans except for that one.

Barb I cannot believe that they will not work with you regarding your work hours.  Does he have any idea what you are going through.  Lets light one of his "you no whats" on fire!

I'm going to do my same routine tonight, Hot shower, goop on my still open sore from surgery, drugs, mouth wash, lotion everywhere, hair check (to see if it's coming out yet), then zzzzzzzzzzz   I am looking forward to more dreams.

Stay happy and thank you all for everything  Kristi

jill323

Kristi -

Hooray !!!!!   I knew the old Kristi was in there somewhere.   Amazing what a little sleep will let you do.   Sounds like you might have hit on the right mix of meds for you to get you through this.    BTW, I loved the potato metaphor in your post.   Very philosophical of you... glad I am not the only one who does that.  

You sound so much better.  I am so glad.  Getting back to doing what you want to do can make a huge difference.  I also really liked point about your parents.   You are right, no matter how old you get or they get, they will still be your parents.    My Mom and Dad are divorced, and do NOT get along in the slightest.  But, both of them insisted on being there when I had my surgery, which at the time, really stressed me out - thinking about them even being in the same room.  But, to their credit, they put their differences aside and managed to "co-exist" for me.  That meant a lot to me and says a great deal about parental bonds.

As for me... the Vicoden whacked me out last night and I over slept this morning.  Almost felt hung over.   I will work from home this morning, but unfortunately, got called in for a big meeting this afternoon.   Not to worry... it is one that I really wanted to happen.   So, it is worth going in for.    Feeling a bit better today.   Biggest problem is the itchy scalp.   That is making me nuts. 

Well, take care ladies !   Barb and Debbie - Hope to hear from you later today !

Jill

jill323

Hello, Ladies -

Quiet tonight.  Barb, I hope everything in your port placement went OK and our boss behaved himself.   I like Kristi's suggestion about what to do with him (devious.....). 

Here it is relatively quiet tonight.  The most traumatic thing is that I had to inform my husband tonight that for the umpteenth year, he did NOT win People Magazine's "Sexiest Man Alive".  While distraught that Hugh Jackman (Hugh Jackman?!) beat him out, he takes some comfort in knowing that he still wins the "Sexiest Man in our House" award.    This year that award was bestowed upon him by a special panel consisting of one bald lady with an itchy scalp, tingly feet and really sore knees.    He seems oddly OK with that.  

In all seriousness, I did something I tonight that I thought I would never have to do.  I got out the dirt devil and vaccuumed my hat.   Not every day that you vaccuum a hat.    But, I think it will make a big difference in preventing this itching on my scalp.  The things we have to do now.   Sigh....

Well, hope everyone is having a good night !  Kristi - sweet dreams.

Jill

P.S. I have not been drinking.  Bummer

barbjdiehl

HI, all went okay with the port, just sore, felt like a truck ran over my chest, Ive been keeping ice on it off and on and taking a percocet as needed.  Also got some xanax from this doctor, the not knowing's as talked about by everyone, those are what is keeping me up.  So now 10 more days til my first chemo, this time next week I will be sleeping at my parents in NC.  So Im going back to work this Sunday daylight and work Monday daylight, that will give me 20 hrs, then I leave for my parent on Tues and come back here Sat., work that Sunday daylight and then MONDAY 12/1 will be the chemo.  My husband will be going and maybe my sister.

Who do most of the people here take and about how long does it take, do you ever feel like dosing when you are there?

Where did people get their wigs from?

Cripe it started snowing here already, wish I could stay in all winter with my little cap on and a blanket! 

jill323

Hi, Barb ! 

Sounds like you got a plan.   And you are right, the anticipation is the worst part.

First, there is a list of things you should buy in front of chemo on the Chemo forum of this site.  It is toward the top and has a little "pin" in the topic.     But, the first thing you have to recognize is that everyone reacts differently - even if you are in the same regimen as someone else.   Cristl and I are on the same thing and different things are happening, for example.   Kristi and Cristl, though, both had sleep problems, etc.     So... while they give you a list of side effects, just be aware you may have some, all or none.   I know, just what you wanted to hear. 

However, one of the commonalities I have seen is the importance of staying hydrated.   Make sure you really hydrate yourself up front, and drink water thoughout your treatment.   While the center I go to has water (and soft drinks and coffee and juices) available to you, I take my own type that I like because it is the only thing that tastes good to me.   I also take my i-pod (because I hate daytime TV and want to block out the noise), and my favorite cozy blanket (even though the center has these too).   If your center does not offer snacks, I also recommend taking a light snack - I find myself eating peanut butter crackers and those little Teddy Grahm things because the center offers them.    Because I am a naturally hyper person, I also take some cross word puzzles and a book, but never seem to get very far with these (you will see why in a minute).

As far as how long it takes, that depends on the regimen.  I think you are on TAC.  Kristi -Isn't that the same one you are on ?    But, plan on being there for at least 2-3 hours.  By the time they get you hooked up, get in all the premeds and the like and then give you your meds, it would likely take that long.  The regimen I am on has to be given slowly, so I am usually there for about 5 hours.   That is why it is regimen dependent.   As far as "dozing" (which is what I think you were asking about), that is also dependent on your regimen.   The stuff they give me knocks me on my butt and I could not keep my eyes open if I wanted to.    However, other regimens make you hyper.    I personally don't know which way TAC takes you.   I am sure one of the other ladies can help you on that one.

As far as Xanax goes - I also take that one.   I find it really helps me sleep when I need it.   Hope it works as well for you as it does for me. 

Finally... wigs... well, my doctors office gave me a big old folder with LOTS of places I could get wigs.  Some of them even free and some of them supplemented by insurance.   I personally did not go that route.  Guess I am more of a "hat" person.   But, I bet if you asked at your doctor's office they will give you some literature on wigs.   AND, I know there are some other ladies on this site who went the wig route.    I will leave it to them to impart their wisdom to you !

Where are you located that it is snowing ?   We have had some flurries here, but luckily, not the big stuff.

Jill

Mocity

Hi Ladies,

I just returned from my 3rd chemo/Herceptin treatment.  It went well and was uneventful.  I still was there 4 hours though.  3 out of 9.  They tell me the hair will start coming out.  I dread this night because it is the one where I just don't sleep at all from the Decadron.  I am too reeved up.  They did lower the dose of it today and I did fine so they said they will try to lower it with each dose.  The weekly is a pain to do but seems like the side effects aren't TOO bad so far.  Knock on wood!  I am tired, I am achy like I am getting over the flu and I look puffy.  Of course the hair thing will drive me nuts.  But one step closer to our final goal, right?

One thing nice today... my first day of treatment when I first got in there I was crying and pretty upset.  A girl around my age came over and hugged me and basically told me she got through it and so will I.  Today when I got there she had a huge box of "goodies" for me..... good ones!  Books, lotions, candle, beautiful cross, candies, scarf, etc.  One thing about this is that I have met some of the nicest strongest women.  It has showm me true kindness!

Have a good night everyone!

Kristi, I am so glad you got a good nights sleep!

Barb, My Onc's office gave me a long list of wig places and the NP noted good places to get them and where generally people liked to go.  Maybe you can ask there.  I personally have bought FOUR!  Crazy, huh?  One of them my hairdresser gave to me as a gift... a human hair wig that he cut and styled just like mine.  Another angel!

Jill, you made me laugh about the Sexiest Man Alive and the hat!  My boyfriend and I were joking about the Sexiest Man too.  I said something to the effect that Hugh is hot but quickly said... but not as cute as you sweetie.  Then he said whatever and we both laughed.

kristifromsandiego

You guys are such a crack up, I think I should tell my husband that he's the sexiest man alive, he was walking around looking for underwear........which of course was all dirty because know one has done a wash in 2 weeks.  Yes, finally he found a pair.  I did the wash!!! 

Barb, I am on TAC.  They give me the A and the C first, one at a time.  One makes you Pee red immediately so don't worry, it happens to everyone.  Then they give you the T.  They give it to you really slowly at first to see if you feel any reaction to it.  Some people react to it and they either need to slow it down or mix it with other anti reaction drugs.  Before they gave it to me they gave me a second does of Benadryl just in case.  I was fine with everything.  You need to have someone there that can take notes or remember things for you, even if you feel alert through the whole thing.  A few days later I didn't remember half the things that the nurse said.  I also did not even remember even getting the Nueropren (sp) shot.  They gave it to me right before I left after the IV was out.  My suggestions would be to prepare yourself before you go, however that is hard because you have never been.  I like Jill suggestion to drink lots of water or juice at least 2-3 days before you go and while you are there.  I also think you should start anti constipation meds, if you at all think you are constipated tell your doctor immediately, don't wait.  Don't worry about the hair thing yet, take one think at a time, otherwise you will drive yourself crazy.

 Jill, Sorry about the head scratching, I can just see you with the vacuum.  I vacuumed today also, but just enough to get the dead bird feathers off my carpet, my cat was working overtime.

Cristl, I will be thinking of you tonight.  I know very well how the nights go on and on.  Sleeping is so important.  I am now getting 5 hours of constant sleep, but I need to use drugs to get it, it is like a time release capsule.  Has your doctor given you anything.  This coming Monday will be 2 weeks since my first chemo and I think that is when my hair will fall out but so far it does not itch or hurt.  I cut it pretty short but have decided to have it shaved when it starts to come out..  It also, will be terrible because that is when I think you "look" sick.  Right now I can still go to the store and everyone does not know. Kind of a relief.

I have handiwipes all around the house and carry them with me when I go out, I am worried about getting sick, I also wondering if I should go to any holiday parities or meetings with lots of people.  What do you guys think?  Am I crazy?

Have a good evening.  Kristi.

Debbie1218

Hi everyone-

Sounds like things are just progressing right along. Kristi-Your post telling us you slept made tears come to my eyes. You were so very down, and now sound like such a different  person! I'm so very glad!  Cristl, I'm glad the treatments arent too horrible for you. I dread starting them, but on the other hand just want to get this whole thing started so i can count the days, weeks, months until it's done. I've had decadron before, but I don't think the doses I had were nearly as high- I never had the  sleep issues, or feeling reved up- but I sure know there were days I wish I did feel like that.

I believe I will receive my first dose Dec 1, maybe Dec 2. Have an echocardiogram, an ekg, and mri of my brain all scheduld for next Wed. Good thing I am not on the list of those planning to cook. My daughter has finally decided it's ok to come, since I won't have started anything yet. So the house will be lively with 4 kids, 4 dogs, my neice visiting my sister (two doors down), and I'll be in la la land after taking valium to get me into the MRI machine... should be an interesting day .

The Avistan is a clinical trial. This is the third phase, and my doc really wants me in it. I won't know if I'm even receiving the drug until I complete most of my chemo. I signed the papers today. Another first- another bout with tears. Lots of potential side effects, but there are lots with the TAC (ACT, CAT??). also. We thought long and hard on that one. My doc went thru pros and cons with me and my husband.  The pros just outweighed the cons on this.

I went out today afterward and bought 2 hats. I don't know if you have ever heard of "UnderArmour", look on the Bass Pro web site, but they have an ultralight cap type hat that is just really nice.  This stuff keeps you warm but not sweaty. The other is a nice knit warm hat with a brim to go down to my eyeballs- if I don't have bangs past my eyebrows I go crazy! Heaven help the hairdresser that "trims" them too short...I decided to leave my hair just like it is, long enough to put up on my head. If my bangs go first, my head gest buzzed. No question about that. My husband laughed and said I just jixed myself..Might go looking for wigs, not quite sure yet. I don't know the best places to go here, and really don't know if I would wear it. Have to think on that one too. All I remember is my Mom always wore them and one time it blew off and went across the parking lot where she worked..guess I could use double sided carpet tape

I hope your itchy scratchy head gets better Jill.. oh how I dread that too

 Ahhhhh......so much to look forward to. I am so glad to have you all...I do believe I'll be depending on you all more and more the next few weeks...I am glad the kids are all coming for Thanksgiving and not Christmas...that would probably be more than I could deal with.

Hope you all had a great evening!!!

Debbie .

jill323

Hello all !

Nice to hear from you ladies as it always is.   I have not written in a couple days.  Have had a lot on my mind - some or which I am not sure how to verbalize appropriately.   Someone said something at work that triggered a whole lot of thinking (I know, I think TOO much).    But, when I figure out how to talk about it, I will.

Anyway, Kristi - You sound so much better. I am so glad for you.  As for your question about getting "sick" - I don't think you are being silly... Just being cautious.   My assistant actually kicked me out of work one day when there were lots of sick people around.   (Yes, I listened to her).   However, I think we have to find a balance.  We also cannot let this thing run our lives, which is why I was so proud of Cristl when she had her "wild week-end" (still jealous, Cristl).     So, I am planning to go to the holiday parties, but take the precautions I need to including taking the wipes, not shaking hands, washing my hands frequently, etc.   That said, you know, I think I had an almost "cavalier" attitude about this at first.   But, I had a something that happened that made me realize I need to be more cautious.  I will tell you this story in the hopes that you don't get too freaked out.  For me, it was just a cautionary epiphany.   About a month ago, I had a dream about a woman who I worked with in the UK.   It had been about two years since I had spoken to her, which is why I thought it weird that I dreamed about her.  Anyway, the next day at work, I thought to contact her via instant messenger to say 'hi'.   Turns out her husband had lost his battle with lymphoma this last April.   Did the cancer kill him ?  In a way.   He was taking very extensive chemotherapy when he got pneumonia and his body was not strong enough to fight it off.   This hit me like a ton of bricks.  I thought to myself... "somebody is trying to tell me something".     So, right after that I lost the cavalier attitude and started taking a little more caution.  Again, not letting the cancer run my life, but being smart about situations.   So.. Kristi - my very strong opinion is "No, you are not crazy".   

As for the other things, I still got the vaccuum out for the hat, although it won't be long that I won't need it at all.  They hair I have left is just "wispy" at this point.  Your active cat also struck a chord.  We have a dog, but seem to have this cat that adopted us.   My son named it "TAC" (which is "cat" backwards), and ironically, the regimen most of you are on.    Well, we have a dog door that leads to the back deck that allows the dog to come in and out.  One day, the darn cat figured this out (smart cat) and I went to my bedroom and found a cat sitting in the sink of the master bathroom.   We have since found out who it belongs to, but it refuses to go home.   It seems to like us better, despite us having a dog that cannot stand it and the real owners don't seem to mind it liking us better (hmph).   I have had dogs my whole life, but don't have a clue as to how to take care of a cat.  So, Kristi - I may come to you at some point for "cat advice".   (Yes, my house is akin to a three ring circus).

Debbie - So very nice to hear from you.   It sounds like you have reached what I call "the turning point".  The turning point is when your attitude gets to "let's just get on with it already".   Having a plan, while scary, is a relief.  Sounds like you and I will be going through chemo the same week.   Let's commiserate !   Interestingly, this last time, there was a local lady who is on this board and just happens to go to the same center I do.   We went through chemo the same day and we were burning up the "private message"  part of this board through the next week.  It was oddly comforting going through it at the same time - because even as supportive as family members are, no one quite gets it unless you go through it.  Not that we have to be "private" about it.  Just that this is how that lady preferred to do it.  But, I offer the commiseration up up to you if you need it and/or want it.

As for Thanksgiving - I am so happy your daughter decided to come.   Yes, it will be a crazy day, but what a day !    When I was out of the country, I missed this holiday terribly.  We did try to have a Thanksgiving with some of the other expats (which was always fun), but it was just not the same.  For the longest time, my kids actually thought on Thanksgiving you were supposed to go to the beach, because that is what we always did !   Since being back, I always host Thanksgiving at my house for the simple reason I that I have a great house for Thanksgiving (big kitchen with two ovens, kitchen opens into the living room so those preparing can be part of the "action", etc.).   This year is Dad's year (my parents trade off who "gets" Thanksgiving given they are divorced), and my brother and sister and their families will come.   Because of my situation, my Dad is coming early to help with preparation - he LOVES to cook, so this is a treat for him. 

With that note... I will be on vacation next week (hooray!) and will be around.  But, as I know next week will likely be crazy for most of you, I want to wish you all the happiest of Thanksgivings if we cannot connect.   This year, I am truly thankful for each of you- my new friends.  I cannot even imagine going through this without you at this point.  

Jill