**NEW** Starting Chemo March 2009

Buddy1

Great to see you here on this board..and kidding too.( about the condition of your house)  I also had those things on my feet when I had my mastectomy. You do get used to them...

I don't know how to put that many things on this board but I can give you your own special hunk.

I do hope you enjoy him.

"

Be strong.Will send you something else tomorrow..

WE ARE ALL HERE FOR YOU...

Hugs,

Francine

Need I say more about the latest hunk...

Good evening all......WOW what a day I have had....last night had another fever of 102.....onc keeps thinking it is my port but the area is fine, no redness or tenderness.  I had to go back in today for the nuelasta shot that they forgot to order yesterday and I had to get 1,000 ml of fluid because my BP was 80/60....it is normally low but wow that was super low for me.  My cold is now a sinus infection so I am on antibiotics that won't kick in for 48 hours.  I am resting as much as I can feeling a little bit better each hour.........I am now officially at the "I can't wait for this to be over" phase.  I know I will bounce back quickly but goodness when it rains it pours......

We are going to have warm weather this weekend so I plan on sitting outside while the littles play in the driveway and soak up some Vit D per Patti.

Sending healing thoughts for speedy recovery from hospital stays to SE's being minimal.  Thinking of you all and sorry for not posting individually but you are all in my thoughts.

hugs,

Diane

TGIF.  I'm catching up here after a full day of work followed by a half hour walk in some beautiful weather with my dog, followed by a 4 hour nap - didn't mean to sleep 4 hours, but when I closed my eyes for a minute, that turned into one long minute.  

Buddy1 - Thinking of you and hoping all goes well on Wednesday for you.  I don't think you have to worry about having your chemo pushed back, especially being on DD schedule which just means you have the same interval that many people have anyhow through the whole AC portion of their regimen.  When I get into the Taxol phase, I plan to push back tx #11 because of plans to be out of town.  I asked my onc about getting tx where I'm going and he said it was not worth the necessary logistics, and that it would make zero difference overall if I did 12 rounds of Taxol in 13 weeks rather than 12.  It's also acceptable in the protocol for the trial I'm in to have tx pushed a week.  I asked more than once and told him there was no way I wanted to jeapordize my tx and he put me completely at ease about it.  

Raymon - You are a ray of sunshine and positivity, but I don't know about making groceries, lol.

Ricki13 - I've had some interesting experiences with friends and acquantances, as I'm sure we all have.  I dance at an Arthur Murray studio, where I see the same people all the time, but don't know all of them well.  As I've started showing up in hats and bandanas, people have approached me with questions, concern, and offers of help, in most cases without apprehension, but sometimes very tentatively, like last night someone said "I know you must be weary of having people ask you questions, but I just wanted ask how you're doing."  I assured her that I don't mind talking or answering questions, and I appreciate it when people care about me enough to inquire.  Many folks that I wouldn't have thought of as close friends have offered me everything from coming over to walk the dog, to rides, to bringing me food (all things I'm able to handle myself, but it's nice to have the offers).  On the other hand, I have a group of 6 girlfriends, including me, and we've known each other for 20 or 25 years.  Over the years, sometimes months pass where one or another of us drops out of sight, but in general we're a tight bunch and always come back together.  One of those girls, who was one of my very closest friends some years ago, hasn't even called or emailed me, though I know another of them told her about my diagnosis.  It's mind-boggling.  I've also experienced everything in between, and most of my close friends have stepped up and check in with me regularly.  Having said all that, the real support through all of this comes from you guys here on this forum.  There's nothing like talking to people who totally get it.  

Diane - So sorry to hear about your fever and the rough day you've had.  Sitting outside in the sun sounds like a terrific plan of action - enjoy.   

We have beautiful weather on tap here in DC, and I hope everyone else gets some sunshine and Spring weather this weekend.

In the friend department most have been absolutely great.  Offers to do anything including cleaning my house.  (Which my husband says I would clean first before they came ) so haven't done that , to offers for meals, cards, calls, e-mails, etc.  But I have one friend of about 20 years who lives about 80 miles away.  We used to meet every few months for breakfast together.  Since I told her  over the phone, she found a reason to say she had to go and I have not heard one word from her.  It kind of hurts.  This is a person who in the past would have done anything she could do for me. i think I just need to let it go.  Maybe there is some cancer history with her family in the past and she can't deal with this.  I just wish she could be up front about it..  I have had 12 other friends all volunteer  to go with me  to chemo,( I am on Taxol weekly x 12 with herceptin every 3rd week) so I have someone to visit with each time I am there.  That has really been great.  I guess we will really know when this is over who cared about us and what was happening.  Hope everyone has a weekend of sunshine and no SE's.  Annette

Good Morning Everyone!!!

Just checking in for a quick minute before I'm 'forced' to eat breakfast . 

To backtrack on the 'Friend' thing -  The few friends I count as close have been as close as ever, I'm lucky that when we first discovered eachother as friends years passed and we found out we were in the same family one on my mother and on on my father (talk about fate).  Now my children (ages 29 & soon to be 22) they each handled it differently.  My son called constantly, stopped by my job (it helps that he works on the same Campus - hee hee) every chance he got to check on me. 

My daughter ... I'm going to use as the possible example (or reason) why some of your 'close' friends or even family members may have distanced themselves ... I was diagnosed in January, had my surgery on Feb. 6th, her birthday was Feb. 12th.  Prior to my surgery she made what I hope was joke about me still making a Rum Cake for her birthday (I pride myself on my cooking skills) .  After I told her that would be "NO." she was disappointed.  My husband had asked her to stay with me the weekend of my surgery because they could not replace him at work (long story) and she agreed.  I was very disappointed when she did not call, nor did she show up??  I did not see my daughter until the first week of April.  This means she hadn't seen me lose my hair or go thru any of the changes I was going thru.  Her bestfriend kept asking her 'have you seen your mother?' and she would be honest and tell her she hadn't.  Then her bestfriend asked ' Well, do you know what she at least looks like now?' and she was honest and said no.  This was confusing to me and her bestfriend as we all have 'myspace' pages and are friends.  Her bestfriend was constantly visiting my site to see my Triple Negative updates (pictures), so she began to tell her about my hair loss, etc.  I couldn't believe my daughter had not even looked at my page??

It wasn't until she after she came to see me, that I understood.  She didn't say anything while she was there, but once she got home, she called me.  Her conversation brought tears to my eyes as we talked.  SHE DIDN'T WANT TO SEE ME SICK.  You have to remember, I lost my brother (her favorite Uncle) less than two years ago to Cancer.  We were both by his bedside when he passed, just as we had been throughout his battle.  But it wasn't much of a battle, because he gave up and didn't want to live.  She began to relive those fears and didn't want to see me like she saw him.  This could be the reason some of your friends have strayed away.  Some people can't handle illness very well and you already know when most people hear 'Cancer' they equate it with skin & bones, wasting away waiting to die.  I'm just throwing that possibility out there and a suggestion .... You may want to reach out to them, send them some pictures, let them know you're in this to win it.  After I explained to my daughter that I was not Uncle Wayne and that I have made a conscious deciscion to live.  She began calling every day, although now she can't stop by because she was exposed to TB from one her patients and we are waiting for her test results ... I don't want to take any chances, but at least we are laughing together on the phone.  I realize the best thing I can do for her is to reassure that I will not hide my meds behind the Armoir, I will say not I took them and know I didn't, I will not switch doctors, not tell them of my history and hope to get a better diagnosis, I wiil eat (even when I don't want to) and I will take care of my health (these were just some of the not-so-good choices Uncle Wayne made).  I have to say my daughter and I agree we are both mad that he chose to give up.  We truly believe if he had least tried, he could have won.

Back to what I was saying .... Reach out to your friends, maybe they just need to know you're handling your business and you're not seeking pity, you're seeking their love and support.  The same love and support the used to give.  Let them know you are still the same person, just with a little more excitement in your life (smiling).  Remind them how special they are to you, don't be so quick to cut them loose.  After reaching out, In time (as someone mentioned), things will sort themselves out.  If your friends still don't attempt to at least call you, then you have your answer and you can save all your energy for your friends who are there for you.  Hope that helps.

'Makin Grossrees'  (phonetic spelling - heehee)  Any 'real' southerner knows all about Making Groceries (LOL)!  I was still saying it my 20's until I realized that was one of the ways people determined I was from (don't say it!) the country (oh nooooooo!).  I admit I don' hear it unless I'm around the ole folks who came up during my Grandma's time (she was 93 when she died and that 3 years ago).  We now say we're going to the store to shop or pick up some things.  We now have what my husband likes to call 'Eda-ma-ka--shun (thank you, thank you ..even with Cancer we still keep the jokes rolling!!).

Chemocentric - I really do like that word!!!

ginagina - Paraphrasing one of the most remarkable movies "So it shall written, So it shall be done." Now who can guess what movie that was from and who made the statement?

To Everyone - I have to go eat now and I know I've missed some of the posts, but I'll be on later tonight ... here's wishing you all a restful and as much sun as possible day!

Hugs & Kisses, Raymon

Diane - Great to hear you'll be relaxing - I myself enjoy the sun on my asphalt driveway on occassion.  Today I am going to the High School to watch some friends daughter's play lacrosse,  since Steph moved on I miss the parent chat at these games, so I'm going to enjoy the sun, in a chair there.  Hope you are feeling better today!!!

Buddy - yes I did go out last week with dh and friends, it was a good time.  Thanks for asking.  Hope you are hanging in there,  still sending well wishes your way!

Luv2Sing - my daughter - I mentioned in earlier posts that she also seemed to distance herself from my diagnoses.  My husbands sister died from BC about 7 years ago (so my diagnoses has been hard on my Mother-in-Law also).  Steph is in her first year at college, so I really did not want this distracting her too much, but a how are you feeling would have been nice once in a while.  After a rant with my onc about her, the onc suggested she come to my last chemo (she wll have been home for 2 weeks by then).  I have also been to a few of her lacrosse games and we have since had somewhat of a heart to heart.  I think our girls are concerned that now they may have a history and that is hard to face also, although sounds like your daughter is in the med field and older.  On the "talking to your girls about their girls" on the home page of this site is an aritcle that seems geared to preteens/teens, but this article did talk about fears daughters' could now have.  

Elsewhere on this site is a thread- What's the worse thing anyone has said to you?  Some of it is heartbreaking, but a lot is pretty funny - pages and pages of people putting their foot in their mouth.

There are a lot of people out there who just don't know what to say- so they don't say anything. People at work I used to talk to often haven't said one word to me since I came back afer being gone 6 weeks after surgery- but other people I have never talked to at all have asked me how I'm doing.

I know I used to be one of those people who was scared to say anything to people who were going through a rough time. After my experience with bc,  I am not scared of saying the wrong thing anymore. One of my best friends lost her sister about a year ago in a plane crash. I was telling her how how many people had offered all sorts of support after my surgery- she said- after her sister's funeral- no one called. I felt horrible. I felt like I wasn' t there for her- at the time I thought if she had needed to talk, she would have and knew I was available. But I should have made an effort to let her know that at the time.

Hi All,

Beautiful sunny warm day here in NY.

I totally agree with Alyad. I have learned after appreciating how many people called me that sometimes you don't know what to say. I greatly appreciated aquaintences calling me. I do hope that I learned a lot from this experience and will be a better person in the future and not be afraid to call people in need because you don't know what to say. Reach out and see what they need.Some will talk and others won.t.But we tried ....

Buddy- I do hope you get to go home when you want to..And if you want your ovaries out hopefully they will take them. I do feel bad for all you are going through.

Luv2Sing- another beautifully written note. All react differently to illness.

Stay strong...

Hugs,

Francine

Hi All,

Very quiet today on the board .I have some time before going out once again to celebrate my birthday with my childhood friend. Here is a cancer story of mine. It made me very upset when it happened but I can look back on it now and laugh.

I played Maj Yong with the same women every Tuesday  for five years after my retirement from teaching. Then came this fall with numerous biopsies, ultrasounds, MRI/s , doctor visits etc. We all know that routine, one that we would like to forget.

Well I had a Breast Surgeon appt on a MJ day early in October. I told the ladies that I had to leave early to go to a doctor. Soon before the time my husband was to pick me up and take me to the doctor I said to this women can you please speed up as I have to leave soon for the appt. You can imagine how nervous I was ...Well she yelled at me in a very loud voice. Why would I hurry up for you. I am here to relax. The other three women gasped .  At the prescribed time I was ready to leave. I went to the car and told my husband how she yelled at me. He said well what did you say. I said I said nothing .He was upset with me. Well I stewed over this day for a few weeks. Finally decided that she owed me an apology. I was not going to tell her what was going on in my life with the cancer because no one should be yelled at..I met her alone just before MJ. I told her how upset I was with her yelling at me and that she  owed me an apology. Well she said she did nothing wrong. So after 5 years I told her I quit the game..She really did not care. the other women called me but I told them that was my decision. I never told any of them about my cancer because I did not want any special treatment due to the BC.That was the end of this game of Maj Yong.

Fast forward about three months. It is now January 6h the day after my mastectomy. Why so long I  did have a lumpectomy in between ..I am in the hospital feeling rather good which amazed me. My husband comes into my room to tell me that Brenda ..the nasty women  was seen in the hall. Well I am now alone in the room and my hospital phone rings. I pick up the phone and it is Brenda. She says I see you are in the hospital. BTW why are you here.I say I had a mastectomy yesterday. BTW that is why I had to eave early in October. She replies OH. CAN I COME AND VISIT  ? Unbelievable nerve.  I said I am tired I don't think so. It turned out her husband was in the same hospital

.I can now look back and laugh at the whole incident.

I do have a new game with nice supportive ladies, one of whom had a double mastectomy a few weeks ago.

Just thought I might share this story. As Gina says maybe some of this is boring but it had a great impact on me ..I guess it had to do with what was going on in my life at the time and I guess also because I always treat people with respect...

Hugs,

Francine

Francine, so sorry to hear about your MJ notreallyafriend - some people- their lives are all about them and "their" needs- like her telling you she's there to relax-to hell with your appt. I hope that her learning about your situation maybe was a small wake up call to try and learn to put herself in another's shoes.

My mother can be one of those people sometimes- any situation where she is inconvienced is all about her- she never stops to think about why something might have happened or what the other person's point of view is. I've temporarily stopped talking to her for awhile during treatment bc I don't have the energy it takes to deal with her. she makes me so frustrated that she is so oblivious to others feelings. Sorry I didn't mean this to be a rant on my mom.   

buddy... LOL!  Keep having fun with those buttons on the hospital bed. Seriously, though, DO get better soon.

Diane... Keep us posted!  AGAIN, I feel soooo fortunate that I haven't been in the hospital or had a high fever (knocking on wood right this very minute).

Alyad... You made some good points.  I know they're true.  In fact, almost minutes yesterday after I posted about being disappointed in some of my friends... one of them called me! 

Francine... Not boring at all!  Some people just don't get it...

That's all for now... going to bed now. 

Okay, finished page 50! 

Rachel who is Ricki:  What an ordeal for your whole family.  I hope the gene test is negative, I sure do.  And I hope your sister's treatment is successful and that you can get past this and move on, and that your dad will be okay, and that someone has a real strong shoulder (and maybe some good cookies and cocktails) for your mom.

Rachel who is Sakura:  I wish you could have the Emend, but you are better off not cracking your head open in the bathtub.  This too shall pass, and you'll be a greater warrior for making it through without even getting the nausea drug.

Jan:  Seriously.  What you want is a bunch of bald women descending on Texas?  LOL, just kidding.  Sounds fun, but I'm really hoping to somehow get to Arizona.  So many of my good friends have moved there over the years, and my best friend (who is also in AZ) is getting to the point that I think she's clinically depressed.  I need to get her out for some fun and a reality check before she wrecks her wonderful marriage.

My husband wants to have a party here when I'm done chemo.  So many people have done so much to help me, we've decided we want to host a barbecue for them.  Of course, he joked, "Can we have them bring the food?"  LOL, he's getting used to other people cooking for us.

Francine, the trip to Italy sounds beyond heavenly!

Sessna.  I also feel sorry for her.  That's obviously not to condone her actions, but still.  I hope she finds help somewhere, because she's certainly not getting it where she thinks she is.  Faith is not supposed to be what she's making it.

Okay, two more pages to read.

Michelle

Caught up!  And Gina did appear, but not Janine.

Buddy, this sucks.  I hope you get out on Monday.

I have to say, none of my friends has said or done anything to upset me.  I have this one acquaintance, I always knew she was a bit over the top, and she seems to surround herself with people who are like her.  It's quite odd.  Anyway, I ended up telling her about my diagnosis when I thought I might need some carpooling assistance, and after fawning all over me she immediately went straight to her network.  Now, every so often I'll be out somewhere and one of her friends will practically strangle me with dramatic concern, and I never know when or where it might happen. 

My sister (who lost her best friend to breast cancer 4 years ago) and I were talking about this yesterday.  She said sometimes when someone she knows is going through something, she's not sure how to express concern, so she just glosses over it and then asks how everything else is going.  But I pointed out that you can't really gloss over the elephant so easily.  I think that in the future when I'm faced with something like that and I run into someone, I will simply acknowledge how sucky it is, give the person an opening to tell me how sucky it is, whether they want to take it or not is their choice.  I tend to like little opportunities to kvetch a bit.  It's like letting out a little gas, a nice relief!  LOL.  And sometimes I want to change the subject.  Most people are good at recognizing that if I say, "Oh, you know, it sucks.  Have you resolved anything yet with Johnny's IEP?" then I'm not in the mood for the extra attention, and I'd rather hear about the issues with Johnny's IEP.

I wonder if my friends feel comfortable because I post everything on fb and on my blog.  I'm not a private person, so this was never destined to be a private battle for me.  I think I actually have more close friends now than I did when I started this journey.

Michelle