February 2012 Chemo
Comments
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((((((Christina)))))) she has the sensitivity of a brick. If you feel strong enough, you would be doing her (and all her other patients) a favor to let her know what she did, maybe an email might be easier on you. But you do have the right to mourn lost hopes and dreams, it should just be on your timetable, not caused by someone else's stupidity. Much love
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Susan I will definitely say that if I have to see her again. Usually I see the FNP when I get my herceptin treatments and hopefully they will have me go back to seeing her. Feeling better today. Thanks for the support ladies.
I got my new prosthetic breast yesterday. It is so much better than the pillow boob I got after surgery. It stays in place and looks normal. I love it. Progress, right?
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Hi Christine
Glad to hear your feeling better after that boneheaded remark made to you and your DH. You should bring it to her attention though. Young or not she chose this field of medicine and needs to be made aware of what certain TX's do and how far reaching they are.
Your going to feel a lot better in your clothes with your silicone boob. Like you said WAY better than the little fluffy ones.0 -
christina...hugs ....yes; you need to voice this to the gal and maybe to her super...as MLB said, chooisng this profession she needs to know that she was off base....there is so much more to caring than just the medical aspect of her job....
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Thought I better check in. Doing ok here, but I've been a little under the weather. First the shingles, which were pretty bad, but responded well to the medication. Now I've had a cough for the past three weeks. Its pretty moist, and the rattle in my chest wakes me up at night. Chest x ray does show a small pneumonia, and I'm on antibiotics. I'll be glad when my immune system is back on track.
Hope everyone is having a good weekend.
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Firstcall - is this normal? Someone once mentioned to me that the immune system may not remember everything that you're immune to. Any merit to that thought?
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AEM - I'm beginning to wonder. I'm used to being the one who never gets sick, and I'm having all these infections now. I think the immune system probably takes a hit along with everything else.
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Firstcall, sorry to hear about the pneumonia--that does seem disheartening, particularly since you are such an active person. Is there anything in particular you can do to speed the healing of the immune system?
Christine, that was a thoughtless remark, pure and simple. I think you are entirely within your rights to point it out to her when you get a chance.
Ali, are you off the Tamox now? Seeing any difference? I'm sorry to hear your meeting with your mom was not a joyous occasion, but good on you for going, at least you know you tried.
Ran the 5K last week, a couple minutes slower than the year before but am very pleased to have done it. Now I want to train for a half marathon, if I keep feeling good. The Tamoxifen does tend to make my bones ache.
Finally going topless--got a real hair cut, so it looks like a style--extreme, but still, a style. I would say I'm about 4 weeks behind AEM's avatar. It's kind of nice to just not give a rat's ass and go out like I am.
So I finished rads July 10th, and went to see my MO last week for a three month checkup--all looks good. (yay!) Since then, I have developed three itchy red bumps on the skin over my TE, right around the MX scar. I'm trying to decide if this is worth a call tor not--it almost looks like poison ivy, and I wonder if you can still develop Rads reactions at this stage. I know people have said you can get stuff up to six months later. And is it an RO concern or an MO concern?
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Christina- sending you hugs and thanks for the reply I was worried.
Firstcall- it's a worry with a bad cough as they last so long, hope you feel better soon.
I had my first flu jab as I was told my body won't cope if I got flu. Omg, it hurt like hell and my arm is hot, red, itchy and sore.
I have started yoga and its really hard work, not sure how much I will be able to do.
Have started doing my seminars and today was a 6am start. I think I feel better having done the first one in 9 months. Really strange talking to GP's and drug reps but I think I did ok.
I'm still on Tamoxifen and feel great apart from not sleeping, I must wake every hour.
When I see onc next week will ask if I can get sleeping tablets to take maybe once a week.0 -
Ali, I took sleeping pills if I did not sleep at least three hours straight for more than two nights.
FirstCall, I hope you feel better soon. A cough lasts such a long time. I think we all hope our immune systems start working better!
I am still on abx, so can't get my flu shot yet. But, on the other hand, been pretty much cut loose. Don't see my onc til Jan. Got a set of labs and flushing of my port in 6 weeks. Then have to decide if I want to get rid of it.
Finally will start chemo rehab next week again, after my Herceptin was stopped and EF problem, had to get both my cardiologist and onc approval before I could start. So when you all are doing half marathons, and five mile runs, I am still gasping for breath doing ten minutes on a stationary bike. Yuc.
Well, much love to all.0 -
Yes, but Moonflwr, you are still getting on that bike and doing the ten minutes, and thats something to be proud of. You just had surgery for goodness sakes!
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It's been a while since I've logged in. I've been thinking of all of you though. The fingers and toes still bother me and I have been sore from the fall several weeks ago. work is going better. But I still hate having to go in each day. On the plus side, I've always liked what I actually do. I got the shingles shot last week. it's about $300 and my insurance will pay totally since I've reached my max out-of-pocket for the year. The appt with the eye surgeon isn't till next week so I don't know yet when I'll have the two (separate) cataract surgeries. Sure hope it's in this calendar year.
Ali: sorry your visit with your mom was so horrible. But, as someone else said, you kinda knew what to expect, but that doesn't make it hurt any less.
Firstcall: sad that you're having to deal with these infections. You're so active, you'd think you wouldn't catch anything. but I guess it's just not that simple. Chemo...the gift that keeps on giving. For me, it's my teeth and eyes that are affected...so far.
Christina: that doc sounds mindless. I hope you'll say something to her. I've found I'm much more vocal with everyone I come into contact with. Sort of...I've been quiet all my life and ...not any more. I'll get it said. I'm usually polite about it but will be stronger in my statements if I'm not treated right. (With all but my boss: I'm afraid to speak up to him cause he has the 'power'. But my boss has been nice so far).
Hair: Mine is looking better. Very short but at least not the shiny bald head look I had for so long. THe only thing is it gets cold with the cooler weather. I still wear the baseball caps a lot and may need to switch to warm winter type ski hats or something.
Gotta go to work. Happy Monday, Everyone! (yuck!). But, I will say. I am glad to be alive and still kicking and fighting this stupid disease. Hope to be around a long time. (even though I am also depressed yet). Seems like that doesn't make sense!
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Hey, Fldrmr. Good to see you and hear that you are doing well. Let's just say I want to be like you when I grow up and have the bulk of this past me.
I'm getting ready for my nipple sparing bmx on 11/6/12 and am having waves of anxiety about it. Ugh. I'm going to get my shingles vaccine too. Who needs that extra pain in the butt.
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Gritgirl: Gee, I don't recall Firstcall saying that's where his pain was! (hee hee.....lol.... sorry, couldn't resist).
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Just saw this on another board. Incredible.
Your relationships are about to change. All of them. Some will get
stronger. They will probably not be with the people you would expect.
The people you want to handle this well might not be able to for a
variety of reasons. Some of the reasons will be selfish. Some of them
will be entirely innocent and circumstantial. All of them will be
forgivable because no one plans for cancer. Carrying bitterness or
anger won't help your recovery. Fighting for anyone to stick with you
won't cure you. Those who can, will. You will be determined to have
more energy than you do. You will convince yourself that you are
thinking straight, are able to handle all of this and do not need
anyone. You will run out fuel. Your body will change first and your
mind will follow. You won't lose your mind, memories or sensibility.
It will all come back.But, you will be different. You will never have the same sense of
self. You should embrace this. Your old self was probably really
great. Your transformed self will be even better. Give into what is
happening and trust it. You are going to feel fear. Even if you are
normally stubborn, confident and seemingly invincible you will finally
find yourself admitting that you are scared of something. Cancer is
scary and incredibly confusing. The unknowing will eat at you worse
than the disease itself. You'll need distractions. Music and sleep
will probably be the ones you resort to most. Reading will become
difficult. So will watching TV or movies, having conversations,
writing and basically everything else. They call it "chemo brain" for
a reason. You will feel normal eventually, just a new kind of normal.When you feel afraid let yourself lean on those around you. Cry. Be
vulnerable. You are vulnerable. There will be time for strength, but
never admitting weakness will cause anxiety to mount and your
condition to worsen. Let it all out. Yell if you need to. Sing when
you feel up to it. Sob uncontrollably. Apologize for your mood swings.
Treatments and prescriptions will often be the cause of them. The
people that love you will understand. The people that love you will be
just as scared as you are; probably more. They will be worrying even
when they are smiling. They will assume you are in more pain than you
are. They will be thinking about you dying and preparing for life
without you. They will go through a process that you will never
understand just like they will never understand the process you are
going through. Let them process. Forgive them when they don't
understand. Exercise patience when you can. Know that those who were
built for this will be there when you get to the other side and you
will all be able to laugh together again. You'll cry together too.
Then you'll get to a place where you will just live in the world
again together and that is when you know that you have beaten this.The sooner you recognize that you are mortal, the sooner you can
create the mentality for survival. There is a chance you might not
make it. Just like there is a chance that you will. Don't look at
statistics. You are unique and what is happening inside you is unique.
Your fight is yours alone and there are too many factors to compare
yourself to others that have had your condition. No one will want you
to think about death, but you won't have a choice. You will think
about it from the moment you are given your diagnosis. Come to terms
with it. Calmly accept it. Then, shift every thought you have into
believing that you won't die. You are going to beat this. Your mental
focus on that fact will be more powerful than any treatment you
receive.Your doctors and nurses will become your source of comfort. You will
feel safe with them. If you do not feel safe with them you need to
change your care provider immediately. There is no time to waste. This
shouldn't be a game played on anyone's terms but yours. When you find
the right caretakers you will know immediately. Do not let insurance,
money or red tape prevent you from getting the treatment you deserve.
This is your only shot. There is always a way. Find those hands that
you trust your life in and willingly give it to them. They will
quickly bring you a sense of calm. They will spend time answering your
questions. There will be no stupid questions to them. They won't do
anything besides make you feel like you are the most important life
that exists. They will never make you feel like they don't have things
in control. They will be honest and accessible at all times. They
might even become your friends. You might celebrate with them over
drinks months or years after they have cured you. They deserve your
gratitude, respect and appreciation daily. If you get upset at them
during treatment know that they'll forgive you. They get that you're
going through something they can't imagine- but they understand better
than anyone. They see it every day and they choose to be there because
they want to make the worst experience of your life more tolerable.You will need to find balance after treatment. Start by seeking
balance during treatment. Eat well. Sleep well. Listen to your body.
Explore meditation. Experiment with new forms of exercise that aren't
so demanding. Embrace massage and other body therapies. Go to therapy.
A therapist will be able to guide you through your journey in ways you
could never fathom. Do not be too proud to speak to someone. You
cannot afford to store up the intensity of the emotion that comes with
fighting a life-threatening illness. Let it out for yourself. You will
begin to hear your voice changing. That voice is who you are becoming
in the face of mortality. Listen to that voice. It will be the purest,
most authentic version of you that you have ever known. Bring that
person into the world -- strengths and vulnerabilities and everything
between. Be that person forever.You will inspire others. It will feel weird. People you haven't spoken
to since grade school will be in touch. Ex-girlfriends, former
colleagues... even people you felt never wanted to talk to you again.
The influx of interest in your seemingly fading life will be greater
than any living moment you have ever experienced. That support is what
will shift a fading life into a surviving one. Be grateful for every
message. Be appreciative of each gift and each visit. There will be
moments where all of this attention will make you feel lonelier than
you have ever felt in your life. In a hospital room full of people
with messages stuffing your inbox, voicemail and mailbox you will find
yourself feeling completely alone. This is when you will realize that
you could afford to have a stronger relationship with yourself. That
only you walk this earth with 100% investment in you. Make the
investment and use this as an opportunity to reexamine your
self-worth. Love yourself more than ever and recognize how much love
there is for you in the world. Then start sharing that love. You will
come to see that even when you are the neediest person you know you
can still be giving. Giving will make you feel better than taking.When you get to the other side you won't believe it. They will tell
you the disease is gone. Everyone you know will rejoice and return
back to their lives. You'll constantly wonder if it is coming back.
Slowly this feeling will fade, but cancer will always be a part of
you. It will define how you see the world moving forward. You're going
to feel like the future is a funny thing to think about because the
present is going to suddenly seem incredibly important. Keep moving.
You'll be more productive. You'll understand who truly loves you
because they will still be there. You'll want to meet new people that
connect to the newly evolved version of your old self. You'll want to
let go of those that don't "get" who you are now. You'll feel a little
guilty doing it. Then, you'll move on. You don't have time to waste.
The greatest gift you've been given is that you now understand that
and you're going to make the most of every second. You're going to be
the most passionate person you know going forward. Translate that
passion to a greater purpose. Be fearless again.I was diagnosed with leukemia at the age of 27. Now 28, I have been
told I have no trace of the disease in my body. Jeff Tomczek is a
freelance writer and the founder of C2Bseen, Follow Jeff Tomczek on
Twitter: www.twitter.com/C2Bseen"0 -
Thanks Susan (aka gritgirl),
I really needed this today - just at this moment.
I miss all of you and apologize for not participating more. I read everything you all write but have felt so far behind in responding that I couldn't catch up. Somewhere inside of me I know that is stupidly silly, but it is what it is.
Did I write that I really needed what gritgirl posted today?
I did. I really needed it.
Love,
Diana
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Diana: I really needed this too. Believe me. Here is the link to the original article.
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
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Lovely, thanks Susan. That really hit the spot.
Dlthm, don't worry just keep coming back. I know I feel bad when I can't reply to everyone specifically, but get over it, we have all been there, just keep talking when you can. I know I am not alone when I say it doesn't matter. Much love..0 -
Susan, that was very well written. Thank you for sharing it.
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Diana: Don't stay away because you can't respond to everyone and what's happening. I did for too long and am determined not to anymore. We don't all need individual responses, just general good wishes and up-to-dates on how you are doing. Come for the support. We all still care.
Susan: That was beautiful. It meant a lot to me, also.
My today: It was dreadful. My work had me take an Excel class (with a bunch of co-workers) at the local comm college. I had to move to the front of the room. Still couldn't see well. Can't wait for my eye surgery. More scared about my vision than I was/am over the cancer. On top of that, the class was a level 2 and I should have been in level 1. I was so lost at one point I was sucking away on life savers to keep from crying. Sigh. I hope no one noticed. Why, oh, why do I need to learn more complicated stuff I'll never use on my job! Dumb boss. Wish this was at least something that is truly useful to my job. Believe me, it isn't. (Looking forward to May, 2013, when I tell the job 'goodbye'!)
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Wow thanks for posting that Susan - that is awesome !
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Susan
Wow. That was relly well written and spot on.
Diana
Don't worry about not being able to comment on everything really. Sometimes we all go MIA due to other things going on in life.0 -
Susan, that was amazing. So glad you shared it here.
Firstcall- I hope you feel better! Gee whiz, pneumonia on top of everything else this year!
Feeling tired and frustrated tonight. Ever play "Whack A Mole" at a fair or at the boardwalk? I feel like that is my life right now. As soon as I get work under control, I realize I am behind on my schoolwork. When I get my schoolwork caught up, I realize I'm behind at work. When I work hard at both, I find myself eating junk food because it's fast and easy, so I gain weight, which I am really worried about - I want to lose weight not just to look good, but to reduce my chances of a reoccurance. Then I realize I've hardly spent time with my husband, haven't returned calls from family and friends... I keep whacking at those moles but they pop up faster than I can keep them down. *sigh*
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OH and I stopped tamoxifen 3 weeks ago and I feel like my hot flashes have gotten worse over the last week or two?!? They aren't really hot flashes so much as I feel HOT for extended periods of time, and really thirsty! What is up with that? It's not my blood sugar, I just got that checked at a wellness fair at work and it was fine.
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Hey, all:
Just wanted to say how grateful I am for all of you and your support. I posted that same article I posted here on another list and it did not go over well. It was a good reminder of how nice it is to have good, solid support. You all rock.
Oh, and just found out that they won't be doing a sentinel node biopsy or dealing with my lymph nodes at all during my upcoming BMX. Makes sense since it's already out of the barn as they say. I was relieved because that means at least I won't have to deal with one thing.
Hope everyone is doing well.
Susan
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Susan,
thanks for posting that--I was reading it and being resistant in my head, and by the end I was thinking, "Hmmm. How wrong was I?" (I think that a lot.) Really insightful piece of writing. The heck with the haters. I got no time for that these days.
So my kids are doing the Time Warp for a musical theater/revue. I am still cracking up from watching them practice. "Its just a jump to the left...."
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There was not one thing in that writing that I didn't click with - thought it was extremely insightful - I was blown away that such a young person...let alone a man wrote it..(no offense to the men)
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How could anyone possibly object to that insightful article? Some people's kids!!
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schiatzi
My sentiments exactly!
Firstcall
Sorry to hear about the pneumonia. My goodness you've had your share of it since finishing TX.
Today is exactly a year since I had my fateful routine mammogram! I can't believe a whole year has passed and of course everything that's happend in between.
Been super busy with the new job which I'm loving BTW and of course many, many visits to my Mom at her residence.
Christine
You've mentioned before that you work with alot of dementia patients. Is it typical for them to become fixated on certain things? With my Mom its going to the washroom. Refuses to use a diaper (who could blame her) but of course she can't go alone. I have no issue taking her and helping her when I'm there but my other family members won't/can't. The PSW's are great there but she has them run ragged and if they don't hop to it she's shouting and swearing. My family members get so upset when this happens when their visiting and think my Mom should be sedated or something. How would you handle this? I mean if it means she's less agitated OK but I don't think it should be done for the sake of "we can't handle her outbursts".
Your opinion would be so gratefully appreciated.
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My point exactly. What was offensive there?
AEM, I love the new photo.
MLB, so glad you're loving your job and so sorry to hear about your mom. I think I've heard that folks with dementia do get very focused.
Hildy, can I come and do the Time Warp with your kids?
Susan
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