Starting Chemo April 2009

AmyIsStrong

Now that I am home and not on vacation, I have the time I wanted to spend answering Lesley's question about people who didn't do chemo being in the same 'club.'  I think it is a very interesting question and one that can be considered from many angles. My thoughts follow.

I had chemo/rad/herceptin, the whole deal - BUT just a lumpectomy, not mast and reconstruction. So from a surgical standpoint, I DEFINITELY don't feel like I'm in the same club as those of you who have done (or are still facing) all that add'l surgery. Sometimes I feel like I 'got off lucky' in that regard, when I read about the challenges involved in it, although nobody who read the list of stuff I've been through in my signature line would say I got off easy. 

My husband's ex wife was dx with bc just a month after I was. (I had a joke with my husband that any breasts he ever touched just wanted to fall off, but that's cancer-humor only we can appreciate.)  She had to have lumpectomy and rads, and declined tamox, and to this day, she insists she didn't even HAVE cancer. (She had DCIS.) So rather than US minimizing her experience, SHE was the one that chose to. so there's someone who didn't WANT to be in our club.

When we were in the couples group study during treatment, there were 4 couples. One other one was doing the chemo/herceptin/rads like me, another had DCIS - lumpectomy/rads only, and the final woman only had what she called 'a breast reduction' on both sides - nothing else.  SHE was someone you would have thought got off easy and was not really a member of the club. But we were in this group for 8 weeks and got to know each other pretty well.  This woman was older than me (prob late 60's) and a big Italian grandma. Very cozy, loved to cook, she had some long Italian name but everybody called her "Sunny" and she was a very sunny person.  She talked about her experience, and how she had had very large breasts = she called them her 'bazooms' and she loved to cuddle and rock the grandkids against them.  She described how she felt so lost without them (she still seemed pretty well-endowed to me, but I guess it's all a matter of perspective). She cried as she talked about how she threw away all her pretty bras b/c she'd never wear them again, and how she struggled so hard to get a feeling of her own sexuality back.  

The experience really changed me. Seeing someone go through SO LITTLE tx (compared to me) and be so deeply affected made me realize that regardless of what we go through compared to someone else, our own pain and struggle is very real to us. 

I do feel that going through treatment is one of the 2 things in my life I am most proud of (other one is putting both my daughters through college on my own).  But maybe that's silly - what choice did I have anyway? Not go through it?

One other funny thing in that group - one of the week's topics was about sex. It was announced ahead of time. Kevin & I were significantly the youngest in the group. We felt like when that week came, the pressure would be up to us to talk (being the youngest couple and presumably the most sexually active). Well, the big night came and....the OLDEST MAN jumped right in and talked and talked and talked. He was over 80 and had fought in WWII!!  We didn't have to say anything.  It just goes to show..you never know, right? (he was the sweetest man - he said that when he was hoping to "get lucky" that night, that he would 'throw his hat in the ring' around lunchtime that day - drop a little hint so she would know -  and hope for the best. I just thought that was so cute. The wife was blushing.)

Oh the things we learn, right?

inthemoment

That's a very thoughtful answer, Amy, to a rather complex question that Leslie posed. I think it took some courage to bring the topic up, so good for you, Les, that you did and, at least for me, made me acknowledge some feelings.



I had the initial mastectomy (really not much of a choice, since the tumor was right at the nipple and not conducive to a lumpectomy). I had already been told I would need "the big guns" in chemo, because of the hormone status, er pr highly positive, and her2 positive.



So, I went through Adriamycin, Cytoxin, Taxol and the year of Herceptin. I didn't do dose-dense, partly because I was older (60 at the time of diagnosis) and physician protocol. So I went to chemo every 3 weeks for 3 months, and then weekly for the next 9 months for
the Herceptin.



I had the expander put in during the mastectomy, and started instilling the saline after
the Herceptin was finished. I had already decided on a prophylactic mastectomy on the other
side because of the difficulty in diagnosing me. Then the expander ruptured because they
gave me an MRI and the metal on the expander ripped! So, the other mastectomy and the
exchange and new saline implant were done about 1 1/2 yrs after diagnosis. In between, I
had a hospitalization for pneumonia during chemo.



Why do I revisit the whole experience now? Because for me to honestly answer Leslie's question about whether other woman who have not gone through the extended chemo/more radical surgery are in the same " club" as I am, takes a trip down memory lane..how do I remember what it was like?


The short answer for me is yes, we are all in the same club. The more thoughtful answer is I believe that the way we perceive our club is very personal. For me, it would have taken a much greater toll on my psyche to have kept any portion of either breast. I needed them OFF. So, I am not sure if that makes me a more qualified survivor ( oh, I don't like to
use that word..always makes me nervous that it will bring about bad luck"). My chemo
decision was also based on the fear of recurrence if I didn't do it. The weekly trips to the onc
for infusions was my " dues" to the club, in the hopes that if I did everything I was supposed
to, I might have a better chance at survival than my mother had, who died from this disease
at 52. I wonder if I had chosen lumpectomy ( had that been available to me) or had opted to
have a less taxing chemo cocktail ( which I could have done, but was afraid it would increase
my risk of recurrence ) or had decided not to do the AI, which has caused me great
discomfort, and maybe all of the above have contributed to my recent heart problems, how
would I have classified myself then?


Does going through all of the surgeries and chemo and reconstructions, separate us from our other bc sisters? I, personally do not think so. Yes, a different approach, but most of us, as we have seen over and over in the past 3+ years, live with the shadow of recurrence every day. I believe that is what makes all bc sisters members of the same club.
I can look at Helen and Betsy, and see the challenges they face, which I have been fortunate
enough to escape up to this pont, and think they are in a different club than I, because of their
challenges, but we can't divide ourselves like that. We lost Lena, and that is the club none of
us wants to join, so I see the strength in the fight as being one membership for all who have
been diagnosed, regardless of treatment.


Wow, I had no idea that this question would prompt such a visceral response from me. Leslie, it was a good question, as I think we have to be one unit to fight as hard as we
can...thank you for bringing it up.


On to the hot topic of the night... Hurricane Sandy. To listen to the meteorologists, this
will be "epic" , and it will be all we on the East Coast will hear through next week. Tomorrow I
and most of my town, I'm sure, will be at Stop and Shop buying up all the toilet paper and
bread ( two must haves for a storm, along with anything that is a carbohydrate) .


I hope everyone has a good weekend, and if the Internet stays up during the storm, I
will be back to give you an update. Now, I am going to post this, and I'm wondering if it will take up a whole page...lol.

Amy, I am sorry that Sandy has interrupted your vacation plans, but hopefully you can reschedule and take advantage of good weather to do the things you and Kevin enjoy. Oh, snd most importantly, congratulations, Grandma - to - be!!

Geri

hrf

Geri & Amy, such thoughtful responses. Each of us has a unique experience but I think we agree that we are all part of the same club. Thankfully we have each other because I really feel that each of you understands me better than my friends that I see and talk to every day. 

Amy sorry about the holiday plans. Sandy is going to be disruptive for sure. Even here in Toronto we are getting warnings about weather coming our way. The rain has started - gently this afternoon but we are expecting winds and lots of rain - maybe even snow over the next few days. I'm worried it will disrupt Hallowe'en for our little ones. Stay dry and warm everyone. 

JudyNaomi

Amy, sorry that you had to cancel your plans, but hopefully you will reschedule when you can enjoy the outdoors together .

I don't have such a long and detailed response to Lesley. I think that what I posted when Lesley originally posed the question, still stands. I think it is the fact that we are given a cancer diagnosis and live with the fear of a recurrence and losing everything which is dear to us, that makes us all members of the same club. Even though we walk the path with our different and individual surgeries, treatment plans and side effects, we are still one.

I think this group has proven that; We have all had different experiences, but there is the one common denominator that unites us all. We are able to come here in the knowledge that we are surrounded by others who understand us and can identify with what we are going through.

Stay safe from the bad weather and have a good Sunday! Hugs to all, Judy.

BetsyBuzz

On the topic of whether we are all in the same club or not. I'm not so sure I have the same answer today as I would have had in 2009 while walking through chemo. Back then I think I might have said they can't relate to us, not because they weren't in the same club but because the couldn't relate to what we were experiencing. But now, I think a cancer dx changes us no matter what treatment plan or the type of cancer. We all must play the cards we have been dealt. Just facing cancer makes us realize how mortal we are. Cancer sucks in all it's degrees and forms. I think we are fortunate, we've supported each other by walking side by side through this and all our trials together for which I am truly thankful. To give our support to anyone with dx of cancer is a blessing that each of us can choose to give as we are all in this together.   

A good subject Lesley, thanks for posing the question. I think it made us all think.

I'm back a work, it's amazing how quickly the restful feeling evaporated. I'm back in the grind. Oh well it was fun while it lasted.

A very rainy weekend here in the NW. Hope everyone on the east coast stays safe.

Titan

my 2 cents Leslie...I hear ya...I had lump, chemo (dd and rads)..a co-worker had a masectomy,,no chemo, no rads, but recon....I dunno...seems like she had a hell of a time with her recon....guess there are bad things and good (?) things with each diagnosis...I think I actually preferred with the chemo to the crap she went through with her recon,

I guess we are in the same club...just different rites of passage I guess...it all sucks though..right?

JudyNaomi

Yes Titan, it definitely all sucks! Betsy, good luck being back at work.

Hope everyone is staying safe from the storm. Thinking about you.

I had my endoscopic US yesterday and it was all clear! They did see a few stones in the gall bladder, but won't do anything about that unless they start to bother me. I was convinced they would find cancer again, so was very relieved.

I am home today, just taking it easy, we got back v late last night and I just wanted to rest today.

Hugs to you all, Judy x

JudyNaomi

Hoping you are all staying safe, warm and dry.

Thinking about you, Judy x

hrf

I still have power here but about 100,000 across the city are without and there has been 1 death reported. They say wind will start to decrease this afternoon and rain isn't too hard. We may have gotten off more easily than other places. But it's not over yet so we are not totally in the clear. A lot of events have been cancelled. Hoping the worst is over.

AmyIsStrong

Not much wind and a fair amount of rain (but not too intense). Lost power for a few hours last night but it came back on around 9. No big deal here but a lot of other places have it really bad.

Helen glad you are ok.  We are, too.

Now can things just stay CALM around here for a little while, PLEASE? 

JudyNaomi

Helen and Amy, thanks for checking in, I have been worried. The pictures on the news are just unbelievable. Amy, how are you feeling?

I hope Geri is doing ok. And of course anyone else in the path of the storm.

All good with me. Feels like a long week this week. We are just beginning to get a hint of the Fall. I am already looking forward to a quiet weekend.

Hugs to you all, Judy x

inthemoment

Just a quick check-in.  I left to go to my daughter's for 2 days - no power.  Rains were not too bad, but winds were very scary.  Lots of property damage and unfortunately, some loss of life mostly due to trees falling.  I am about 40 miles north of Manhattan, where the damage is devastating.  Have been working from home for 3 days - our offices just got power back, so I am going in today for the first time.

Glad everyone else is also safe.

Geri

JudyNaomi

Geri, thanks for checking in. Glad that you are safe.

Hugs, Judy x

JudyNaomi

Hope everyone has a fun, relaxing and calm weekend!

Hugs to you all, Judy x

inthemoment

Thanks Judy - you too!

JudyNaomi

Has been quiet here for a few days; hope everyone is doing ok.

All is good with me. I have an Onc check up next week (12th), I am hoping all will be clear.

Sending everyone hugs, Judy x

Lesleyanne67

Thanks for all the wonderful responses I appreciate all of you so much! Been busy with work and the kids bit I am all caught up with you guys now! : )



Glad anyone in the path is OK



More later - big hugs to all of you and I am soooo happy Pinktober is over



Les

hrf

Hi all. Not much doing here but I guess boring is good considering that we all know what it's like when it's not boring. Hope everyone is doing well.

AmyIsStrong

Took the AI for three days now. Don't feel ANY different.  Lesley (and anyone else taking it) - when did you notice anything?

I worked out super hard this week and am really sore all over, but I know that is from the workouts. Am I sore-r than usual? I don't think so. Maybe I should just not worry about it and see what happens. Your thoughts?

Oh also, I had to have bone density testing before starting the AI.  Got my results - very good. All that weight-bearing exercise really helps. Am encouraged by that.

Another storm coming tomorrow? nooooooooooooooooooooooooooo.

Stay safe everyone in its path.

And love to all. 

Sometimes I think about how spread out we are - east coast, Canada, midwest, west coast, Israel, and our dear Lena in the stars in the sky.  It makes me feel very surrounded by love. Is that crazy?

hrf

I have been on the AI for over 3 years now. I found I have to take it in the morning otherwise it affects my ability to sleep. I did have achy hands but that has stopped. The vaginal atrophy is terrible - so taking meds for that. And of course - the worst - losing my hair - getting worse as time goes on. Bones - hanging in ok - took Zometa for 3 years. 

JudyNaomi

Helen you are so right; boring and uneventful is good LOL!

Amy, I completely understand why you would overthink your soreness, but if you haven't worked out for a couple of weeks, it makes sense that you would be sore afterwards. Good news on the bone density! Another storm? Really? I hope you all stay safe and warm. We definitely pull love from eachother from all over the world - not crazy at all .

Hugs to you all, Judy x

Lesleyanne67

I too take it in the AM and it could ne you won't notice much since you had already been on Tamoxifen. I am really just sore and cramped up if I sit in one position too long and my feet kill in the AM but once I am moving it goes away. I only 44 so I never had this before.



I do not have the hair loss like Helen although a friend did but my hair is much "drier".



A's for her comments about atrophy - that and weight gain have put a huge dent in my sex life hence why Lena was such a fascination for me. I had a healthy libido and was suppose to be in my "prime" and suffice it to say I pretty much dread it now : (. I just don't enjoy it and I resent that being taken away because that is a long term thing. Luckily my honey is very understanding.



Amy, I love your sentiment about feeling surrounded by love, not corny at all and every time I have a rough moment I am going to remember JUST that!



Have a great week ladies



Lesley

inthemoment

Amy, not crazy at all....we do surround each other with love. I checked another discussion board for May 2009 that I had first thought I would join because I was expecting to start chemo in May, but they started me in April, so here I am with all of you. What struck me when I looked at that board was the posts were months apart, and look at us! Always checking in on one another, sharing good and bad. I've said it here before, but I believe Judy has been instrumental in holding this group together. Thank you Judy, I would have missed out on knowing some of the most important people in my life! Love u all.

hrf

I agree that Judy has been our "mother hen" - pulling us all together. This group is very important to me.

JudyNaomi

Thank you all for your kind words. I am not sure that it is all down to me though. You are all very important to me and I try and come by at least once a day if I can, even if I don't post. I truly feel that we are a group of friends who can share just about anything with eachother with few inhibitions.

You have all helped me through what I think has been the greatest challenge of my life so far and that counts for so much.

Being a part of this group shows that we are all in this together, for the good and the bad. We are very lucky to have that.

Enjoy your Thursday! Hugs, Judy x

JudyNaomi

Have a good weekend one and all!

Hugs, Judy x

inthemoment

You too Judy, and all the sisters!

Titan

had to laugh about our Judy being our "mother hen"...she truly is and I thank YOU Judy..! 

JudyNaomi

Titan, wouldn't be the same here without you! Always bringing a smile to our faces !

Happy Sunday everyone!

Hugs, Judy x

JudyNaomi

Hi all,

Hope everyone is doing ok today. I had an Onc check up today and everything was clear! Really happy about that. She has given me some routine tests to do over the next few months and wants to see me in 6 months (instead of 4), so that is good!

Sending you all hugs! Judy x