I’m home (by Lyn)

October 12, 2009

I have more day to day info at my personal blog, but I wanted to post here that I’m home from the hospital after surgery and give an update.  I had a modified radical on my left breast, a bi-lateral on my right breast, and a full hysterectomy all at the same time on Oct. 2nd.  I wish I could say it went smoothly, and is going smoothly at home recovering, but it was tougher than we expected.  The hyster surgeon ended up spending an extra hour operating on me due to scar tissue from my c-sections that had somehow glued my uterus and bladder to each other or my insides, or something.  My bladder took the blunt force of that part of the surgery and had to leave the catheter in for 4 days to let it rest.  I was supposed to go home after 2.  Then I ended up getting a nasty bowel infection while in the hospital.  I was released on Weds. the 7th, and in the ER on Friday the 9th due to the infection getting worse.  Then Friday night my bladder started leaking (this was just this weekend) so here I am trying not to move my arms too much yet unable to use my tummy because of the bowel infection, and now my bladder LOL.  I was a sight!!!  At one point Saturday I was laughing so hysterically at how pathetic the situation was.  But lo and behold, Sunday brought some relief and I did feel a little better yesterday from all of it.  My infection is still not gone, but it is improving and I just called the doc about my bladder and he sees me tomorrow.  He told me at the appointment in a little joking matter ‘if I break it I fix it’, so I fully intend for him to fix it!  I get my right drain out this afternoon, my left is still not ready and will probably be at my appt. this Friday.  I don’t have alot to say on the emotional aspect of what I’m feeling about not having my breasts, I’ve been so consumed with all the unexpected pains to think on it much.  I’ll get there I’m sure.  I’m still in alot of pain, I heard that the mastectomy doesn’t hurt that much because they cut alot of nerves with it, but my left side does hurt the most out of all of it. When the pain ebbs, the infections are gone and my bladder is fixed, maybe I’ll be able to say it was worth having it all done together but for now I’m undecided.  My advice to anyone contemplating having such a radical surgery is this:  don’t do it the week after you finish 5 months of chemotherapy.  Give yourself a few weeks to recover from chemo first.  I’m convinced that my compromised immune system is what has made this so much harder.

On a brighter note, my pathology reports came in.  4 lymph nodes positive out of 15 and only trace ‘miniscule’ is the word the surgeon used of cancer left in the breast itself.  I have Inflammatory Breast Cancer, so it’s a little different in that it was spread all over the place as opposed to being 1 tumor.  She said there was no live cancer visible to the eye, and only under the microscope did they find the little bit they did.  It was all dead cancer/scar tissue.  She was very confident that she got it all (one plus side to having chemo the week before) and had definite clear margins.  She was thrilled as was my oncologist, and said that now I can consider myself cancer free.  Hmm… that sounds too weird yet.  Maybe after radiation and my next scan…

I will start radiation in about 3 weeks, and instead of the 6 weeks of once a day daily rads originally planned, my oncologist is suggesting a regime of twice a day rads for 3 and a half weeks.  Apparently studies are showing that it has excellent results with IBC patients.  I haven’t met with a plastic surgeon yet, nor the radiologist, I’m just trying to get through the next 2 weeks without any further setbacks.  Wish me luck.

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Halfway done

September 5, 2009

I was standing in the check-out line at a clothing store this morning buying a new shirt and it hit me that this could possibly be the last time I get to shop for this body as I know it, in this size and shape.  My surgery of radical mastectomy/bi-lateral mastectomy/hysterectomy has been scheduled for October 2nd, 2009 which is less than a month away and I think I am just beginning to realize what this means.  Since my diagnosis in April ’09 I have been consumed with staying positive in the midst of all the IBC negativity, having chemotherapy and a mirage of new drugs along with it, trying to be a normal mom to my 2 year old and now 4 year old and a decently normal wife to my husband.  I thought I was doing a good job of it all, including truly facing what I’m dealing with, except I don’t think I really knew what the surgery meant.  I think most women on this site have had a mastectomy, so I know it is fairly common and that’s what I focused on.  But the new reality of not having my breasts anymore is surreal and terrifying.   My body is going to change.  I don’t know that I am mentally or emotionally prepared for that change yet.  I admit it.  I know that I need to focus on the purpose of the surgery- to make me cancer free- and I will do that but I can’t help but be saddened at the forced changes.  I do take comfort in knowing I will have reconstruction at some point, for IBCers it isn’t right away usually and I am expecting it to be about a year out from what my doctors tell me.  I have read most of the stories on here about ‘foobs’ and the different choices everyone has made with fascination, but I realize also with distance.  I didn’t relate to it so it was easy to read.  I am blessed to have ‘met’ amazingly strong women on this site and in person who have done it before me, and it’s your stories that give me strength to at least try not to focus on my fears and instead think about the future.  I want other newbies to know that it’s OK to acknowledge our fears-and this surgery is just as scary as IBC istelf to me- but we have to try not to let them take over.  I keep picturing this time next year when reconstruction is done, when I will hopefully be finished with Herceptin every 3 weeks, and my son will be starting kindergarten.  My daughter will be 3 and a half and it will be just us at home for the first time- now that’s exciting stuff I want to be around for, and thinking of these things makes the surgery worth it.  I have 3 more chemos to go, I was supposed to have it this week but the kids got me sick and I was unable to.  Then I consider myself halfway done with treatment, which sounds pretty awesome when taking it one day at a time. 

(ps I don’t know if this post makes any sense, my brain is so weird from the new drug doc put me on last week to help with the hysterectomy hormone issues but I tried:)


Waiting and Wondering

August 12, 2009

August 006

Today I had my four month oncology check up. The weeks leading up to my appointments is a very high anxiety time for me. There always is a nagging feeling in the back of a cancer survivors mind that someday their cancer will come back. So those few weeks are very stressful for me.

When I walked through the doors today I expected to sit for 10 minuets or so and get called into the exam room. After I was sitting for sometime, the nurse came out and said there had been a patient emergency and the doctor was running an hour late. Let me tell you it is hard enough sitting in the cancer center for 15 to 20 minutes much less an hour and 20 minutes! Luckily I had use of my handy dandy blackberry and had access to the internet. I also visited with a friend who is the cancer center’s new nurse navigator. She is a really great lady and she kept my mind off my wait for a while.

The time I spent waiting by myself I was surrounded by cancer patients. Suffering from all types of cancer. Woman in wigs, men in wheelchairs, people needing oxygen to breath. I always get some interesting looks in the waiting room, sometimes I can even hear people wispering “She is so young!” to the person sitting next to them with sympathy in their eyes. People do not often thing about young people having cancer.

My check up went very well. I am healthy and my doctor is encouraged at my progress. I have been fighting through some pain lately but it seems to be my nerves reconnecting. It is pain but it means that my body is still healing from my mastectomy and reconstruction and lymph node removal. I am looking forward to the time when I have no pain at all!

Cross posted on Spruce Hill


Stage one of the new rack

July 15, 2009

(Crossposted from last week’s ThrowsLikeAGirl)

Today’s blog is not for the faint of heart or stomach, o fearless readers.   So finish your sandwich or latte and come back when it’s well digested.

You were warned. 

So Monday I went to the hospital and spent most of the day under anesthesia while my surgeons did the complete right mastectomy (pathology was clear on that by the way, yay!) and created a couple of  frankenboobs in their place.  Something I did this time around was look for as many pictures of my procedure as I could so I had a pretty good idea what to expect.  There is a thread on the Young Survival Coalition bulletin board that I highly recommend to people that is devoted to reconstruction.  Brave young women post anonymous pictures of themselves at various stages of their reconstruction so that people like me can get a better idea of what it really looks like.  I plan to post mine as well (though I forgot to take a “before” picture).  Paying it forward and all.  So basically my surgeons are very pleased with how the skin looks (I sort of think frankenlefty looks like a baseball.)  And based on the pictures I saw, my recon is right on schedule.

My chest feels pretty tight (ironically like I’m wearing a bra).  The expanders are in place and I’m pretty sure the plastic surgeon said frankenrighty is already 2/3 expanded.  I have a bazillion medicines to take and I have to admit it freaks me out a little.  I made the rookie mistake of taking 4 ibuprofen at the same time as 2 percocet.  My stomach quickly reprimanded me for that.  I have to give myself  a shot of blood thinner every day.  Which also freaks me out a bit.  Better that than clots though.

As usual, I felt like I received great care at our local hospital.  My room was huge.  Corner suite (or “isolation room” as they call it.)  Apparently word got out about what a scary patient I am.  Grins.  By Wednesday I was regularly walking laps around the cancer ward (I started calling it the Poop Loop.  Anyone who has had surgery can figure that one out.)  The hospital was testing their alarm system on Thursday.  Woo.  One time the alarm was Code Red, so I stuck my head out the door and asked the nurses if we were supposed to be walking out single file.  You can take the teacher out of the school and all…

So lots of people came to visit me at the hospital and I thank everybody who came by   I had been trying to figure out whether to put my compression sleeve back on and my physical therapist (thanks for visiting!) reminded me that I actually have 4 drains on that side right now and that my arm is probably at an all time low in terms of edema.  Which it was.  I could actually slip all the identification bands off my left arm without cutting them by Thursday.  

So I have 6 drains that I will probably have for a while.  Last time I only had 2 and I had them for weeks.  I still think it’s kind of weird that we have to drain and measure the liquid every day. 

So anyway, that’s what I’m doing, where I’ve been.  I am glad to be home.


Perspective

May 16, 2009

It’s a funny thing how things can change over time.

When I was first diagnosed, I blogged about my visit to the plastic surgeon. Weirdly, I was scheduled to see him 2 days after finding out I had cancer. Looking back now, I realize I was in shock. I still HAD Lefty and couldn’t even wrap my mind around the idea that it would be gone in a matter of weeks. Reconstruction was the least of my worries. I wanted to live, and part of my body was trying to kill me. I just wanted it gone. I wrote about how I didn’t care if I was ever reconstructed.

Now here I am, a year later, not dead. With lymphedema. And a cute haircut. And much disdain for my prosthesis. Flefty likes to wander up into my armpit. Which is very attractive. Most people ask if they have anything in their teeth before going on stage. I have to ask if the girls are straight. (Sorry about all the euphemisms, but I’m trying to avoid pRon spam.) Flefty is hot in a non-sexy way. And no longer matches Righty.

I’ve also had a lot of time to ponder whether to get Righty removed. It would help lower my cancer recurrance rate (which is about 60 to 70 percent right now.) It would probably help my stress level since the need for extensive mammograms would be eliminated. One less scan, right? It’s also my best chance for both sides to match, recon or not.

So…I decided to go back to see the plastic surgeon and see what my options were. I had LOTS of radiation which can make reconstruction difficult. I flat out asked him which sort of recon would be the most successful. He said, that in his opinion, making a sort of skin/muscle bra from part of my left back and inserting implants on both sides was my best option. It’s a 3 to 4 hour surgery with a 4 – 6 week recovery. I’d have expanders for a while and then exchange them for implants when they’re ready. I will lose some power on my left side, but I’m not a champion skier or a tennis player, and he assured me it wouldn’t affect my piano skills so I’m think I’m OK with this.

The other perspective change I have is about my plastic surgeon. He was really nice this visit. Funny and supportive. Not like I remember him at all, which makes me wonder if my being in shock had something to do with my impression. I would like to think that I’m a person who fesses up when they were wrong. So here I am. Fessing. So….sometime in July I will be having surgery. Again. But this time it will be because I want it.

Crossposted to ThrowsLikeAGirl


When your self esteem takes a hit

April 28, 2009

One of the hardest part of a cancer diagnosis is the physical change in a person. For the most part, I’ve been emotionally ready for each physical difference a treatment or surgery has made to my appearance.

Last November, on the eve of my first chemotherapy treatment, I was fully aware that my hair would fall out within the next two weeks. I had on standby a bunch of hats I had knitted myself and a few head scarves that I had purchased. When the hair began to come out, I took the bull by the horns and shaved the rest of my hair off myself. As it turned out, the scarves looked pretty good on my very round head and my woolly hats came in handy on cold winter nights. I didn’t mind my bald self all that much and had fun with different colored scarves and coordinating make-up. So many people came up to me and would say “you don’t look sick at all.”

Now though I’ve gone through a different transformation. Last week I had surgery to remove all my breast tissue, both sides. Tissue expanders were implanted and will be slowly expanded over the next few weeks to form hopefully a small C cup breast. In the meantime, I’ve gone from a full C to almost nothing. And since I’ve always carried a bit of extra weight in my middle, I’m totally off balance. Add to the fact that my hair is growing back in what looks like a GRAY color and you have the perfect chemistry for bad body image 101.

I’ve literally gone from a curvy, full breasted, long curly haired women to someone I now don’t recognize. I’m looking for that boost I need to bring me back to feeling good about myself again. I may have found it.

While at the doctor’s office yesterday, my father started a conversation with one of the patients in the waiting room. She is a cancer survivor like myself, having been through the same treatments and surgeries as I have and is now ready for the second reconstruction surgery where the tissue expanders are replaced with breast implants. She then blurted out “I can’t wait for the tummy tuck ” and that’s when I found out that for an extra out of pocket fee, the plastic surgeon can perform a tummy tuck during the implant surgery.

All of a sudden I had images of myself, full breasted, flat tummy, chic new silver euro-hairstyle with a stylish wardrobe, all of which I can wear without a bra. My self image went from blah to smokin’ in a matter of seconds.

Next week, during my first expansion session, I will be meeting with my plastic surgeon to check on my post surgical body. I plan to inquire about the tummy tuck. Since I won’t have the second surgery until sometime mid-summer, I’ve got plenty of time to think about whether a tummy tuck is worth the money. Then again, with the worst year of my entire life almost behind me, maybe I owe it to myself to do something that will make me feel like a total woman again.

Cross posted at C is Not For Cookie


A Year Ago Today

February 7, 2009

550breast_cancer1

One year ago today I had a bilateral (double) mastectomy
At the age of 41
Because I had breast cancer
That was undetected
I said goodbye to my breasts
I was scared
I cried in the waiting room
When the nurses asked all their questions
My friend took my picture in a lovely gown and hat
She sends it to me sometimes to cheer me up
She sat in the waiting area with my husband so he would not be alone
Another friend came to see me in the recovery room
To make sure I was ok and to tell me she loved me
I spent only one night in the hospital
I embraced my reconstruction and my new body
I spent a long time in pain, uncomfortable sleeping, sitting or standing
I could not brush my hair by myself
I took a lot of pain medication every four hours
My wonderful husband took good care of me
He changed my bandages around my drains
Without hesitation
He made sure I knew that he loved me everyday
My friends delivered meals and came to visit bringing me flowers and small gifts
My family circled around me to hold me close
My children surprised me at how resilient the really are
They made me proud to be their Mama
I still had a long road ahead of me
Treatment
Hair loss
More surgery three weeks later
My chemo port and lymph node surgery
This year I made it through all my days, the good and the bad.
One day at a time
I lost my hair and grew it back.
I walked a 5k forthe cure of breast cancer
I became a blogger
I met many woman who share my struggle
Mommies like me
I began to not feel so alone
I have been energized and inspired by them
I started blogging with them to spread awareness
To help other mothers with cancer
I met other bloggers
Who did not have cancer
They cheered me on and gave me encouragement to fight
Sending little messages to me in my comment box
I take nothing for granted
I cherish every moment
I slowed down my life
To enjoy it as much as possible
I decided it is ok to eat ice cream and chocolate everyday
Because life is short
I experienced great friendship
And the kindness of strangers
I joined a support group for young survivors
There are a lot of us in my local group
Too many
I have helped other woman
Who are going through the same hell
Trying to give back
So my experience will not be wasted

 Cross posted on Spruce Hill