Starting Chemo, November 2013 Group

Audra- I have had the tachycardia both times and am nit sure if from the chemo or neulasta but my MO just says to drink plenty. It goes away but for 2 or 3 days it runs around 100 BPM. I will continue to do neulasta because I work with the public and have kids at home so I don't want to take any chances.

Goldie- I also wondered why the AC?

ellen: A great pic! LOL! 

Definitely an Alien! 

Veronica? I'm not there yet. I still go for walks  but I don't go to workouts. I have to be careful of my walks. I have to move gently on my right upper arm that's where my port is. It's healing nicely. I don't hurt now. I know your ahead of us who are still in chemoland.

Love the pictures. Ellen that is hilarious about the shadow. It does look funny.  I notice my head is really hot without hair. My home care nurse was here today (last time hurrah) and she said "I guess you're just a hot head". Haha. I have given her a bit of a hard time over the last 4 months while freaking out over complications and she was very tolerant so to call me a "hot head" on her last day was funny. But my head is so hot that I think I have heat rash. I have a very itchy red spots all over my head. I can't stand having a hat or scarf on.

Otherwise can't complain though so my sympathy for those still dealing with side effects. :-(  Hope you all managed ok through Christmas. Personally I am glad it is over and done.  Take care everyone. xo

Hi everyone~just checking in with all my friends.  Been doing lots of lurking and reading!  Love all the posts!  Prayers and positive thoughts for EVERYONE.  Praying and sending positive thoughts and warm hugs to those who are feeling ill, or extra-fearful, or struggling a lot. 

The past few days have, frankly been physically and emotionally awful.  Like Wrenn, I'm glad the Christmas holiday is behind us.  So so difficult for my husband and I yesterday

jab...your post/question really hit home because I am (and have been since diagnosis) in total disbelief of the statements, behaviors, sentiments and words (mostly lack of, id: avoidance) that I've witnessed since September 2013.

Your comments tie into my sadness/sorrow related to yesterday...and then again today with a big telephone fight with my only sister...awful.  With that said, I feel lost and confused about what people want/expect from me and how I personally need to proceed.

I feel lost, bewildered and confused right now, not to mention physically, emotionally and spiritually ill.

Early on, one of my counselors said something like "cancer will really change things in so many ways."

Not exactly sure what she meant by that specifically but jab, I'm having an awful time with family.  No, I do not think people understand the least bit exactly how ill many of us feel, especially (for me) how ill I feel the first 12-14 days after chemo/Neulasta (minus perhaps those folks living with us, if we are fortunate enough to have others living with us...and I think it's even hard for them to "get it").

I'm recognizing that I am "stuck" with the issue of lack of family/friend support or caring or compassion.  I know it's my issue and I WILL get a handle on it and I WILL work through things.  However, right now it is hard.  And I feel lost.

jab...I think for SOME people, the indifference or lack of acknowledgement is tantamount to fear. 

amazon...thank you for being so honest and posting about this.  I have to thank jab, too for bringing this subject up.  I've hesitated to post about support or encouragement (or a lack thereof from others) 'cause I feel guilty BURDENING others on this site with my problems when everyone has so many of their own problems to deal with.  I KNOW that's what this site is for, support and all but I find it hard to vent sometimes.

amazon...like you, my only support really is my husband.  And I can see that even though we are only a few months into the process, he already has days when he seems worn out...like today.

I also find it difficult talking to certain people because I KNOW they feel VERY uncomfortable if I cry over the phone...a few get downright angry and defensive.  And my sister, who I am recognizing has LOADS of emotional and psychological problems, takes everything personally.  So, if I say something (that I think is) rather benign (for example) "It' so hard for others to understand how I feel...I'm not being critical...I'm just saying it's hard for others to relate to what I'm going through right now...I wouldn't wish this on anyone...I feel alone," my sister will come back with "ANYTHING ANYONE SAYS IS NOT GOOD ENOUGH FOR YOU...YOU'RE IMPOSSIBLE TO PLEASE...NOW YOU KNOW WHY PEOPLE DON'T CALL...EVERYTHING I SAY IS NOT GOOD ENOUGH FOR YOU...YOU ARE IMPOSSIBLE TO PLEASE...SO YOU HAVE CANCER...DEAL WITH IT...AND WHO SAID ANYONE WISHED THIS UPON YOU, ETC, ETC, ETC." 

She simply goes ballistic.  It is awful.

So, of course the calls end terribly and I end up feeling badly 'cause I've upset HER.  It's horrible.

I always tell my husband (and my treatment team), "I feel best the 5 days or so each month I am at the Cancer Center...it is there and ONLY there where I feel understood, cared for and able to let my defenses down a bit."... (but not all the way).

I feel SAFE there and I feel SAFE and cared for on this forum.

And I want to thank everyone who has come into my life here on BCO.  I hope I have touched your lives, too.

just got home from chemo. It was really busy today because of the holiday, so three of us women were out in the same room. We got on like gangbusters! I never opened my ipad, magazine or anything, the time passed so quickly. We formed our own little pop-up support group. It was truly a wonderful experience. We were pulling up shirts and comparing scars and everything. It was so funny because none of us could remember our own trains of thought, and it was ok. People down the hall were wondering what was happening in our room because we were laughing so much. A good moment to cherish, let's take them where we find them.

That said #3 had a small surprise for me. The big D hit in the middle of treatment! I was worried I wouldn't make it home safely in the 20 minute car ride. The nurse said "that happens" and my body recognizes the taxotere now, and wants it out.

Amazon-san sushi chef, I hereby put in my order for raw everything on February 5:I figure 3 weeks after last tx I should be free to eat my adored raw fish, 

Ellen, are you sure that isn't a photographic trace of an alien or spirit haunting you? They've got all these lame tv shows where everyone runs around all Blair Witch Project looking for beings and they don't have nearly as good of evidence as you've provided.

Jab, yes people are so clueless. Unless we're reduced to 80 pounds they think we are fine. A perfectly nice woman I know asked if I would like to take a gentle birding walk for a few miles. I haven't got anything near the strength, however there are those of us here who do seem to remain capable of such things. I was so happy that I felt good enough yesterday to walk my dog about 1/2 mile, I felt the best I had this entire cycle, it felt fantastic to use my body! 

Tonilee, so sorry that you're struggling with family dynamics. Perhaps what we all have to do is shatter all of our preconceptions: how our body will react to all of this; how our mind will react; how our family members see us and our roles, as well as their own roles; who we can rely on and trust. Out of the ashes we will find the diamonds that the pressure created: we may deepen some relationships and come to terms with the shallowness of others. We will learn our own strengths and confront our weaknesses, and emerge Phoenix-like to enjoy a better life freed from whatever held us back. Heck, we can get the benefits of a year of living in an Indian ashram without leaving home. 

Seriously, Tonilee, I hope you can just let whatever the issues are with your family go. Know that we here on this board, although this is "cyber-space" are living breathing people who do care about you. We may not be able to lend physical help to you, but we can give emotional support. My family of origin was deeply flawed and troubled, so I made my own family of friends and created a tight nuclear family to give me the nourishment I deserved but had never received. 

smrlvr...thank you for the post. What you say makes a lot of sense, it really does.  I know I have contributed to my sense of isolation since moving here to Michigan from New York City...so I have no one to blame but myself.  The family dynamics are a whole different can of worms for me.

Guess I somehow expected my cancer diagnosis to make the inter-personal family dynamics different or easier for everyone.  Thought perhaps having someone in the immediate family with a cancer diagnosis (me) might magically make ALL of us...me, my husband, those in his family, my family, friends, neighbors, acquaintances, etc...a bit kinder, more compassionate, more understanding, more tolerant, more grateful for all that we DO have, etc.  I was wrong.

There's no magic.  That's why I'm going to continue working on me and how I live my life each and every day.  Can only be accountable for myself.

But to quote one friend..."cut the excess fat from your life...you don't need it...you don't need to be luggin' it 'round with you."

By excess "fat" I think she means "excess baggage in the way of toxic people and relationships."  I HATE that word TOXIC when describing relationships...it sounds so canned and thoughtless.  But sometimes, it's the only word that captures the nature of certain situations and people.

here is a picture with my daughter and I. Thanks for showing me Ellen

tonilee -- First, a big, big hug. I mean it, too.

Second, you shouldn't ever feel like you are burdening those of us on this site with your problems because we have our own. Instead, keep in mind that what happens instead is that  if WE can feel like MAYBE we can help you, even just a little bit, we are able to forget our own problems for a little bit, and if we DO manage to help you, we've also helped ourselves, because we feel better. SO don't hesitate ever again! If something is bothering you, hurting you, upsetting you, tell us about it!

I'm with you, in that I don't like that term "toxic people," because they, too, have their problems...or they wouldn't be "Toxic." That said, right NOW is not the time for you to be dealing with your sister's problems. Right NOW is the time for you to be kind to *yourself.* THAT is where some magic can happen. Be kind to yourself, and try just *limiting* your contact with your sister. Chat with her just enough so that no one is complaining that you won't talk to her at all -- because I'm guessing you'd hear about that too, if you just refused to talk to her. Pretend you are talking to a complete stranger, chat for a few, and then get off the line. Make a little list of trivial things to talk about ahead of time if you need to; the weather, what you've been watching on TV, etc. Avoid the personal stuff, both yours AND (more importantly) hers.  Do what's best for YOU. Maybe later, when you are healthy again, you can dig into that relationship---and others---and find out what's really going on there. But not now. Right now you have your own problems to deal with, and cancer trumps ALL their problems. Don't feel bad or guilty for putting yourself first right now, either.

Unfortunately, I don't think cancer -- or any major life event-- really changes family dynamics or makes people kinder or all those things you said, most times. I think that's something we've learned to expect from certain sad and rather morbid movies. In reality, from what I've seen, what it does instead is to intensify EVERYTHING. So if someone was already kind and compassionate, he or she becomes 10 times more so, but if he or she was already self-centered and immature....same things... 10 times more self-centered and immature. Maybe it's because everyone goes into panic mode? I don't know. I have a friend who is stage IV, and I've seen this happen with her family; it's just one major drama after another.....all that stress and drama CANNOT be good for any of them.  

It's also not good for YOU. So just don't play that game with them. Do you know someone you CAN cry to? Someone who will just listen and talk and LET YOU CRY and allow you to get all that out? Honey, if you don't, I'll even go so far as to PM you my phone number and you can cry to me, but I'll warn you that I'll most likely cry back at you, just so you know. :P  Seriously though. We ALL need someone we can cry to. 

And seriously, feel free to cry and whine and moan and bitch and complain and whatever else you feel like doing to those of us on this board. It's okay to be scared--hell, it's okay to be *petrified*, and it's okay if you don't feel strong or positive or brave or all that stuff that some people think we're supposed to be all the time, and it's okay to be completely upset over big things, and it's okay to have complete meltdowns over little tiny things that shouldn't even matter. We get it. We do all that too. That *IS* what we are here for, and we DO know and we DO understand, and WE DO CARE!!

More hugs....and remember: Right NOW let's deal with beating cancer. There'll be time for dealing with less-than-ideal family relationships LATER. Really. There will be.

smrlv: I too feel that isolation and stress contributed to my current illness. I come from a small town in Europe where relationships for better or worst always came first. I ended up in a different country and a big city with no immediate family or friends support. Relationships here have always been more reserved and / or felt artificial. I suffered from the lack of support. I have an autistic son who requires a lot of support himself. Until the time I ended in hospital for one week with my recent infection I have never been away from him even for a day. There was never anybody around who could step in for a while and give me and my husband a break. I was always on the job: working at work and working at home. The body and mind can only take so much!  

Phebe: what a wonderful picture! The love your daughter feels for you is RIGHT THERE and obvious. Brought a tear to my eye.

Veronica- HOpe went well today.

Wrenn- I pick tachycardia, getting shot tomorrow.. on that note, my wbc was only 3.4 today and that's with the nuelasta last time??  I thought it should be higher??

Lisa- LOVE The list and I'm on it too...I am lowering my expectations and just going to go with the flow...this tests my patience and type a personality tremendously and I think it's changing me in a good way...the counseling is helping too.

Tonilee-

I'm so sad reading your post...it is awful and hard and amazingly lonely to go through this.  I too, only have my husband and 15 year old daughter, I am estranged from parents for 17 years, have family in other states that haven't cared enough to come.  And this REALLY does show who your true friends are.  My two best friends , one in California and one in Florida...can't come yet....they say they will and want to but can't right now....wondering if they ever will.

But interestingly, an old friend/neighbor from Washington had been texting me to see how I was and she asked to come and visit and she did!!! It was the best thing EVER!!!  SOOO very special!  I have an aunt I'm very close to and we fly up to see her every year.  Well I thought she would come, but she can't either...her sons wife has this as well and is on the taxol portion and doing well but she says she can't leave as she helps with her teenagers...I think she WONT come and it makes me very sad...but that's how people are...some are NOT as good of friends to us as we are to them.  It's SO disappointing...and sad...

The friend that did come is coming again in January so I am thrilled about that!  Some people are that way and some aren't= I just cherish the ones that are! 

Also I have a friend here in town that would go to lunch with, wouldn't call her best buddy but nice and fun to be around.  That woman comes over to 'visit' at least weekly to my house...totally takes my mind off myself and cheers me up...she has turned out to be stellar!

MY neighbor across street, who I thought was my friend, I have seen twice - she's too busy...Also I think a lot of people are scared of 'cancer'- they don't want it=don't want to see it-be around it- think its contagious- something like that...

We are all here for you and you can call me anytime to talk!

Yay INKS!!!!!!  wonderful!!!!