The Final Installment - Nipples!

On Saturday, I had my (hopefully) last surgery for this "episode" in my life: I had my nipple & areola reconstruction surgery. I have been looking forward to having my breasts look somewhat "normal" again and not "frankenboobs" as my husband likes to refer to them!

Surgery was easy and very fast! Less than 2 hours! The doctor took my skin graft from my upper inner thigh...the place where your underwear hits the crease in your leg. I was so worried about having yet ANOTHER scar on my body, 3 c-sections and bilateral mastectomy scars were quite enough, thank you! I kept talking to my plastic surgeon and asking him if we could use my c-section scar tissue for the areola reconstruction, but he kept telling me that it would look better with the inner thigh tissue and, since my breasts already looked so good, why wouldn't I just use the tissue that would make my breasts look their best? The doc won.

Well, we will see how good they look! Right now I still have some bandages on my breasts, which will come off on Friday, but I've also been told that they will still not look great until all the swelling and bruising goes down, in about 6 weeks. Since my breasts are mostly numb, they really don't have any discomfort. However, I am STILL walking funny from the stitches and I guess the glue coating to protect the incision (although it is getting better) and I am still going commando (hurts to wear underwear) but this too shall pass! So will the lack of a full shower for another 9 days...

I want to say more, but I don't know when I am saying too much. Oh well, I am good at babbling anyway. I am totally grossed out today because I just got my period. While that, in and of itself, isn't usually an issue, the first two days of my period are like a flood...I go through a SuperPlus tampon in about an hour...and I usually wear a pad to protect myself, but since I cannot even wear underwear, a pad is totally out of the question. So, I feel even MORE uncomfortable today, so much so that I don't want to leave the house for an extended period of time...oh well, I know this too shall pass, but I just wish that it was possible to take a pass on getting your period every once in a while, like right now, after having surgery.

Oh, and last week, before I had my surgery, I got strep throat and was out of commission for the week. I swear, I am pushing my husband to the limit. He is so awesome and is totally picking up the slack for me, and while I am helping out where I can, he is still schleping the kids to school and after school activities and giving them their bath. I know, I know, it is getting better every day and next year, I'll be able to do this on my own again, but I just want him to go out and work, not have to take care of me and the kids all day. Okay, that's my complaining. Thanks for listening.

It is a beautiful day and I plan to go outside and enjoy some of it, but I just wish I was feeling 100% and not less than that!

This too shall pass...

Four weeks today since I had my exchange procedure (for those of you wondering what that means, I am talking about having my tissue expanders exchanged for final silicone implants - the ladies who will continue to defy gravity when i'm well into my 80s!).  It is amazing how uncomfortable I felt just four weeks ago.  How the stitches would pull and ache underneath the implants when I would stretch my hands above my head.  I thought I was never really going to get full mobility because they ached so much!  But now, I can put my hands over my head with no problem!  I can also walk for 50 minutes and feel no pain afterwards.  Things are good!!!

Where am I going with this rambling?  I know, I do that often.  But I am just realizing that throughout this whole ordeal I can remember thinking that I was never going to feel better, never get through the pain, never get through a night without pain/anxiety medicine to help me sleep, but it passed and now I'm at a much better place.

I even forgot how awful I would feel on my bad days during chemo, and my middle daughter, just shy of 4 years old, would lie down in bed with me and take a nap with me, just because she was worried about me.  It was so wonderful to have her near me and not afraid of me.  She wasn't like that a few months before, when she told me she didn't like me (when I had my drains in after the mastectomy).  So it felt very nice to have her near me...

I guess I just want women who are diagnosed with breast cancer and who are waiting to talk to their doctor, their cancer surgeon, their plastic surgeon, their oncologist, worried that they are going to lose their hair, that it all goes away, it does get better, it is temporary.  And while it is real and it is really awful while going through all of it, this too shall pass...oh, and by the way, I finally got a bikini wax!!!  I know, I know, still too much information, but I am glad to say that I finally needed one!!!

Paying It Forward

Well, I had my first real post-surgery mentor conversation with a woman who had a double mastectomy a month ago, and is just starting the tissue expansion, and knows she has to go through chemotherapy soon.  I tried to be as positive as I possibly could, I spent most of the time telling this woman that "this too shall pass." 

I wanted to tell her that the rest of her tissue expansions (she just finished her first) wouldn't be uncomfortable (painful is the word I really wanted to use); instead, I told her that the expansions might get more uncomfortable but that it gets more comfortable (when the tissue expanders come out and the final implants are put in...no, seriously, about a month after my final expansion I finally stopped taking pain pills to sleep).  I did tell her how I would wake up in the middle of the night and bolt upright from the pain, but that was only seven months ago and now I've got my final implants so that "discomfort" is over.

I tried to tell her that chemo isn't as bad as one might think, but that would have been a lie.  Instead, I told her that chemo sucks when you are going through it, and that's when you need to have a good support system to help out on the really awful days, but that it all ends and your hair does grow back and you start to forget how awful you felt and that your energy really does come back.  I told her to try and remain active, even though it was difficult to get out of bed on the worst days, and to keep focusing on the positive.

Funny, the silver lining for this woman, as it remains for myself, is that we get new perky boobs.  I didn't tell her that they don't feel like the other ones did, that even though these implants feel more comfortable than the expanders that they really don't feel like breasts to me.  That sensation is gone. 

But that is not what matters.  What matters is that I am alive and that I will be alive to dance at my childrens' weddings.  What matters is that the surgeons and the chemo got all of the cancer out of my body (well, I'm 99.9% sure of that) and that I am at a good hospital and the chance for recurrence is so small that I try to leave that fear in the very dark recesses of my mind.  What matters is that after a year of total crap, I am still fairly normal...and fairly healthy.

I am glad that I have people to talk to about my experience (ordeal?) and while there are too many other women whose names I was given to call and talk about their experiences, sometimes it does get too much.  I still find myself emotionally exhausted after a breast cancer-reconstruction-chemotherapy conversation, though the conversations are priceless and I appreciate every minute someone will spend talking to me.  And so, begins my paying it forward and helping out those people who are a few steps behind me...it's just there are more and more women with breast cancer and it shouldn't be that way...

Making Excuses

I really hate making excuses as to why I don't write every day.  It's not like I don't have much to write about, but I swear some days I just cannot find the time to write.  Or sometimes, when I sit down to write I just cannot figure out how to get the words out...but that is another blog for another time, I guess.

Three weeks since I had the "exchange procedure".  I am feeling better every day, though sometimes at night, when I try to sleep on my side, the stitches really hurt, but other than some nagging pains every once in a while and the fact that I have to wear very supportive bras 24/7 for 6 weeks (half way there!) I am really feeling pretty good!  I don't even need to take pain meds at night and haven't taken anti-anxiety medicine since the night before the exchange procedure!  Nice to know that the surgery is over with and only 3 more weeks to go until I can pick up my three kids and swing them around a bit.  Here are some cute pictures of them from the year:

And these picutres are part of the reason I haven't been writing much.  I confess, I am not very good at putting photos in albums for my kids.  I have a shopping bag FILLED with pictures of them from the past 5 years, and while I'd like to say that I've been kind of busy (with 3 kids under the age of 5 and a husband who for 4 of those 5 years left for work before they woke up and got home after they all went to bed, and spending the last year in crisis mode with a breast cancer diagnosis and the year before that, my only sibling dying...but there I go making excuses again!)  and haven't had the chance to put the photos in albums, I'm tired of excuses.  So why is this preventing me from blogging?

I've decided that I am going to make the kids photo books for each year and just put the best pictures of the whole family in the books.  So, I have spent the past few weeks uploading pictures to Kodak Gallery and am now in the process of making the family album.

I just hope I can keep up with this every year...but before I end my blog, I want to write a quick summary of what I meant to post a week ago for Thanksgiving:

I am thankful for my health.  I am thankful for the ability to get up and move.  I am thankful for my beautiful young children who don't give me much time to feel sick or sorry for myself.  I am thankful for the most wonderfully supportive husband who tells me how proud he is of me on a regular basis and who is not only the man that I love but a person who I really like and admire.  I am thankful for both of my parents who have always been supportive in my life but have really stepped up to the plate over the past year without freaking out in front of me at all.  I am thankful for my other parents, I hate calling them in-laws, who treat me like a member of their own family, and who have also been so incredibly supportive of me and have been so helpful to our family.  I am thankful for family on both mine and my husband's side for showing us so much love and support.  I am thankful for friends, both old and new, who have come out of the woodwork to give us their support through this past year.  I am thankful for so many other things, but one thing I think I have made known through this blog is I am thankful for hair growth and the fact that I finally need that bikini wax!!!  I know, I know, too much information, but I've been talking about it so much over the past few months, I thought I'd add that in for comic relief!!! 

Over-the-shoulder-boulder-holders

After you get your final implants, you have to walk around 24 hours a day wearing a bra to make sure that the stitches heal well.  Okay, that's fine, but it's not so easy to meet all the other requirements:  no underwire (because you don't need it and it will rub the stitches underneath the breasts), the bottom of the bra cannot touch underneath the breast directly (because that will hurt the stitches underneath the breasts) and it cannot too tight (because they said not too tight).

I was going to spend this post bitching about how hard it was to find these types of bras and how I felt lost going into a number of stores unable to find what I needed, but I just got off the phone with my cousin and all those mild complaints went out the window.  (Plus, I was able to go online and buy some bras that will work, so really no reason to bitch).

My cousin just recently learned that her teenage daughter suffers from bulimia.  They decided to put her in a facility for a month to help her deal with this issue.  While all seems to be going well in the facility (so my cousin says) she had an awful phone call with her daughter yesterday where her daughter told her she hated her, and that she was conceited and looked down on other people.  My cousin sounded so distraught while telling me about this.  She said she was sad.  Oh, and might I add that this is the same cousin who went through a double mastectomy with reconstruction a few years before me?

You never know what is down the road, and, unfortunately, even though you might think your situation is horrible and couldn't get much worse, you don't have to look far to find someone in a more difficult situation than you!  So, I'll continue to focus on the good things in my life, be thankful that my dad was in town this week to help out with the kids so I could recover and be grateful that I felt well enough today to take a nice long walk with my dad.  Things are looking up!

And they're out!

Just wanted to let you all know that the drains came out!  I will be able to shower in 36-48 hours!  You will not have to smell me any longer, New Jersey!!!  (Or New York or Connecticut!) 

I have to say, I am totally shocked that when I went in to have the drains taken out and to see my plastic surgeon this morning, he didn't even TOUCH me. He barely looked at my scars, just said everything looked good, told me that I shouldn't do anything "high impact" for  the next five weeks and he'll see me in two to three months.

As much as I wanted more information about my next steps, I don't think you can get much better than "everything looks good, see you in two months".  Less is more with this guy, I know that about him.  He is not known for his bedside manner.  In a previous blog, I referred to him as "the troll" because he is short and grumpy and has a bad bedside manor, but I have to say, everyone I spoke with about him said he was so wonderful and did great work.  My boobs look good.  That's really all that matters now.  Maybe one of these days I'll get him to smile.  Now that's a good goal for the next visit!!!

Uncomfortably Numb?

I think I have spent the last 9 months in a weird sort of haze and now I might be coming out of it.  Ever since my diagnosis, I have been on cruise control, or crisis control, just getting stuff done that needed to be done without really figuring out how all of this new information I'd been inundated with was affecting me.  I think that I was just happy knowing that I was facing the cancer head-on and wasn't questioning my decisions, I was just going with my gut reactions.

But now I sit here at my computer, drains waiting to be removed from the tissue expander exchange procedure, stitches poking me uncomfortably under my new breasts (that I have yet to fully examine because I'm waiting for the doctor to tell me that he thinks everything is healing well and to tell me they are really sticking around before I start to relish in their perkiness!!!) I am starting to wonder what I do now?  Especially in light of the U.S. Preventive Services Task Force's (USPSTF) new guidelines, I feel like I need to do SOMETHING.  I have started looking on websites and blogs of fellow breast cancer patients and survivors to get some grounding, get some guidance and get some support.  There are a bunch of incredible women who have been through and are going through what I am going through, it just amazes me.

While I am searching for my own answers, I am comforted by something a friend's mother told me a few weeks ago.  When I was first diagnosed, my friend told me that if I want to talk with someone about what they went through, her mom had said she would talk to me.  At the time, I didn't call her because I was looking for women my own age, in a similar circumstance, to try and find some connection and support.  AND it was so tiring, and so draining to have a conversation with a current patient or recent survivor because I'd be on the phone for an hour with some stranger (with whom I now shared some awful bond) to try and find a parallel story and digest the information, I just didn't talk to that many people.  I found that too hard for me to handle during this period of crisis.

About a month ago, my friend's mother died.  My husband and I went to pay a shiva call and I sat and spoke with this woman about everything else BUT cancer - how her father was doing, about her new grandson, about my friend's kids - and then she went to talk with her other guests. 

As I was getting ready to leave, she stopped me and just said, "I just want you to know that I never thought there would be a day that I didn't think about breast cancer, and then, a few years after my treatment, I noticed I didn't think about it every day.  It got less and less."  (She is a ten year survivor.)  I just stood there as tears welled up in my eyes and said, "thank you".  It is hard to explain how wonderful it was to hear her say that, to know that while right now it seems so all encompassing, that there is a light at the end of the tunnel, and that life really will go on.

Task force opposes routine mammograms for women age 40-49 - are they for real???

I just read this CNN article tonight.  I cannot believe what I just read.  Some task force, under the umbrella of the US Dept of Heath and Human Services, just said that mammograms aren't necessary every year for women age 40-49.  This changes the previous guidelines which recommended mammograms as early detection for women over age 40.  The article goes on to say, that "...[W]hile roughly 15 percent of women in their 40s detect breast cancerthrough mammography, many other women experience false positives, anxiety, and unnecessary biopsies as a result of the test, according to data."

Please, provide me with the percentage of women who experience false positives, anxiety and unnecessary biopsies as a result of mammograms.  Is it more than the 15 percent who saved their lives by detecting breast cancer?  And, even so, having a mammogram didn't kill them.  Neither did the anxiety or unnecessary biopsies.  But what would have happened to the 15 percent of women who detected breast cancer had waited until they were 50?  What data shows how many of those women had a history of breast cancer in their families or felt a lump?  What if they just went in because they knew it was good to have a baseline for future mammograms and were surprised with the fact that something did show up on the mammogram and that they did find out earlier rather than later?  What percentage of those women were able to, or decided to, save their breasts and just have a small lumpectomy?  What percentage of those women who had mastectomies and were able to prevent the recurrence of breast cancer?  What percentage of those women who detected breast cancer in their 40s were able to avoid chemotherapy because the cancer had not yet spread to their lymph nodes or, worse yet, some other part of their bodies?  OR, worse yet, what percentage of those women STILL had to undergo chemotherapy because the type of breast cancer they had was so aggressive that it would have spread, even if it had not yet done so?  What percentage of those women were able to save their lives because they went to doctors who trusted these guidelines and sent these women for mammograms accordingly?

This is a very hard article for me to read given the fact that I am still undergoing treatment for breast cancer at age 38.  For those of you unfamiliar with my blog, go back to February & March 2009 articles which discuss my breast cancer discovery ON A FLUKE because I met a new doctor who gave me a breast exam and said I had lumpy breast tissue so I should go get a mammogram.  She felt no lump, I had no history.  In fact, my OB/GYN who I had seen regularly for two years before then never even MENTIONED a mammogram because there was no reason for it.  When I read an article like this, it is hard for me to FATHOM what I would have gone through if the guidelines were set for a higher age to begin mammograms.  If the recommendation is to wait until age 50, would my internist still have thought to send me for a mammogram?  I highly doubt that. 

This doesn't even begin to discuss what health insurance companies might decide to do based on this task force recommendations.  Okay, while I want to believe that insurance companies will still fully cover mammograms, who knows?  Everyone is cutting costs.  Maybe insurance companies will deny mammograms for women who do not fall under a "high risk" category.  I don't know, I don't want to think about that.  Because I assure you, if the test had not been covered by my health insurance, I GUARANTEE you that I would not have gone for a mammogram.  No way, no how.  Before my diagnosis, I would have told you I was 100 percent healthy.  Some tests might be considered unnecessary, but I just don't see how this task force just pushed back the age for women to get annual mammograms to age 50...oh, and I know this isn't well thought out or well written.  I am still recovering from my surgery of having breast tissue expanders exchanged for final breast implants.  Not even a week old.  I am still on pain medication and have drains running out from under my arms.  This just hit a raw spot.  More to come later when I can properly articulate how PISSED OFF I am.  Congress, here I come!

Welcome Ladies!

Well, the new ladies are in! The expanders are out and my new high-tech tear-drop shaped silicone ladies have made their debut! Had the surgery on Wednesday and to be totally honest, it has not been as bad as I had expected! Well, given the fact that after the last surgery I was not able to lift my hands above my head, this is much better! I have much better mobility and the drains aren't bothering me half as much as they did last time! I'm sleeping much better at night, and can move pretty well during the day. I am taking it easy though, because I don't want to screw anything up with the new ladies. I have uncomfortable internal stitches that bother me more than anything else to the point where I have to lie down every few hours to get more comfortable. BUT as of day 4 after surgery, I can go during the day without serious pain meds and only save those for night time! I know, I know, why not take the drugs, Dali Mamma Lama, isn't that why the doctor prescribed them? Trust me, I take them when I need them and if I need them during the day, I take them. But they make me tired and it makes it harder to sleep at night, so I'd rather save them for night time!

My 4 year old still wants to see my boo-boos. I have told her no. She asks, "Why?" and I tell her that I don't want to scare her. Honestly, I am so glad that I had to go through this when she was 4 and not 10...I don't really want her to remember this ordeal, but I am glad she has a place to go back and read about it (if she ever wants to) and know what this was all about! My 2 year old is pretty clueless except that I don't pick her up right now when she cries. No, I don't leave her on the ground laughing at her expense, but soon enough I'll be back to picking her up so I'm not too upset about that. And, my 5 year old boy still gives me hugs and treats me like nothing has changed. That makes me very happy!

Having said all of that, am I thrilled that the heavy duty surgery is over? Yes! Am I excited to have the rock hard expanders out of my chest? Yes! Am I excited that one more phase of this ordeal is over? Yes! Am I excited to be able to work out and get back into shape in a few weeks? Yes! Do I wish I had nipples? Yes! Will I get those soon? Yes! I know, I know, too much information, but it's true, I have no nipples and the doctor will have to make those for me. Again, I am hoping he'll use some of my c-section scar tissue, but we'll have to wait and see. He's not the kind of guy who likes to be told what to do so I'm not sure how this will all pan out, but enough of that for now! But seriously, if it grosses you out to hear about it, imagine how I feel. The whole thing FREAKS me out, but since I don't have a choice, I'll just tell it to you like it is. But, please know, the fact that someone has to "make" nipples for me is truly disgusting.

So, now I will heal. I cannot wait for this Thursday when the drains come out and then 2 days after that, I will be able to take my first shower since surgery. Yeah, I know, another gross one. Good thing you can't smell me...yet!

Twas the night before surgery

Twas the night before surgery to get my new boobs
Both my parents came up to help keep me subdued
But my mother was complaining of her little finger ache
But at first said, "Don't worry, it's fine, it'll be great!"

All the backpacks were ready for a few days to come
Cause I won't be focusing, I'll be sleepy from drugs!
Me, with my Ativan, was keeping me calm
And not a bit worried of all else going on...

Suddenly, my mom was not feeling so sure
Her finger was hurting and hurting some more
Away to the ER we went in her new beemer
And I dropped her off to come back a bit later.

The new ER facility was really top notch
Made me feel a bit better about dropping her off
When on the dashboard it appeared, all alone
My mother had forgotten to bring in her iphone!

But I was busy, had a quick job to do
My eyebrows growing back had to be waxed, oh, it's true!
so the iphone would wait, and so would my mother
In the lone waiting room (while I bought some Godiva:

Got extra dark truffle, got peppermint too
Got dark chocolate raspberry and one key lime goo)
Then back into the beemer I rushed back to the car
And dashed away dashed away straight back to the ER!

I just wanted to run in and give her the phone
But then thought better that she not stay alone
So hesitantly, I gave the valet my keys
And ran into find what was my mom's disease...

And then I heard her talking to the radiology tech
Wonderd what they'd done to her just yet
As she drew her head in from the talking she'd done
And come from the X-ray she had on her pinky, not thumb!

She was feeling some pain from the way they had turned it
The nice black and blue becoming more prominent
We had to sit and wait a bit more
But sitting with her is never a bore!

Then the nurse came in mumbling "hand specialist"
And we knew that it wasn't the best
A little fracture and perhaps a tendon torn
She might need some surgery, but that you can't bet on.

"You need to go see a hand specialist tomorrow
To find out what is wrong with your pinky" (what a bother!)
We said that's not possible 'cause it was my turn for docs
And then we told her about my little boob op

She said Thursday would be fine and then was away
And mother and I did not know what to say
So, back to the beemer went Mom and me
What a way to spend time the day before surgery!

New boobs!!!

Okay, here's the latest update: T minus 6 days until I get my stylish new more natural-feeling silicone implants! I cannot wait to get these rocks out of my chest! When I went to the plastic surgeon's office, I had the opportunity to molest the sample they had on the desk. I have to say, they felt very natural! I'm hoping they feel that way when the surgery is completed!

Good news is that I will not lose mobility like I did last time. Here's the only positive thing about not having much hair...last time I had surgery and lost the ability to raise my hands over my head, it was very hard to take a shower and wash my long hair...now, I don't have to worry about that! And, though I'll smell a little bit since I cannot shower for a week again, at least my hair won't look like a nappy mess. I can just throw on a wig and feel a bit better! Yeah...I think? Okay, so if you are in the vicinity, please do not come too close. Let me be appealing from afar!

People keep asking if this is the last big haul from the whole year's ordeal. The answer in short is yes, the really hard part is over. The long answer is that I continue to take an IV medicine every three weeks and I still have a "procedure" to get nipples made...I know, gross, huh? I have no nipples now (my husband calls them "frankenboobs") so they will somehow make ones for me. It sounds totally gross and disgusting, but perhaps the doc can take some of my c-section scar tissue for that...get a little tightened around the belly for a teensy weensy bit more upside? (I'm always looking for more bright side of things).

Sorry if I gave you so much information that you now want to barf, but that's my story and I'm sticking to it! I just cannot wait for life to return to normal. What is normal? I don't even know anymore...but I know that all is well and I have things very good and I am lucky and blessed. 2009, while full of wonderful things for my friends and family cannot end soon enough for me!