Wednesday, January 25, 2012

Hair and Boobs

Two things I miss.  Hair and Boobs.  Two things I took for granted.  Hair and Boobs.

I've read about how amputees often still "feel" the limb or body part that has been amputated.  They have sensations of that part still being there.  In a way, I have always understood it.  From a medical standpoint, it makes sense because during an amputation, nerves are cut and those nerves may still send signals to the brain even though that body part is no longer there.  The phenomenon is called "phantom limb."

I have phantom boobs.

After the mastectomy, I often had pains and sensations from my breasts that were no longer there.  Most of the pain and sensations came from the nipples.  Nipples that were no longer there!  There were a couple of times I actually looked down my shirt.  Was this all a bad dream?  The pain was so real that I thought maybe, just maybe, it didn't happen.  Maybe I still had my breasts?  It's a cruel trick your mind plays to be sure.

I also have phantom bra straps.  So many times, I've reaching for a shirt or sweater that is falling off my shoulder - reached over to make sure my bra strap isn't showing.  Only to find there is no bra strap to be found.  I've often been momentarily horrified to find that I'm not wearing a bra.  Until I remember.  I also have had many days walking out the door in the morning where I've suddenly realized that I'm not wearing a bra.  I recoil in terror before realizing that I don't wear bras anymore.  It's such an odd sensation to NOT wear one. Such an odd sensation to not have a bra on.  To feel your sweater or shirt on your body in places where a bra has been for so many years.  I still often feel like I'm missing a step when I get dressed.  I walk out of the bedroom with a nagging that something isn't quite right.

I feel much the same way about my hair.  So many times that I've reached up to brush my hair off my shoulders or neck.  Or reached up to tuck the hair behind my ear.  But, it's not there.  Then I have to quickly make some sort of recovery move like pretending to scratch something so that no one sees me brushing my non-existent hair off my shoulder.  There are also many mornings that I've reached for the brush before realizing that it's not needed.

It's not that I forget that I don't have boobs or hair.  Not really.  I guess it's my mind playing tricks on me.

I guess I could feel sad.  Sad for what I'm missing.  Because I'm missing a lot right now - it feels like.  But, I try to remember that what I'm missing really is a small price to pay for what I've gained.  A small price to pay to, hopefully, ensure a future.

Boob Count: 130

Tuesday, January 24, 2012


Almost 2 weeks out from my hysterectomy and I'm feeling really well.  This is, by far, the easiest surgery I've had.  I stopped taking pain pills 4 days after.

What color will my pee be today?!
I did have to take a some a few days later because I had a horrible sore throat and got a UTI.  I ended up in the walk-in clinic thinking I might have strep (I'm prone to that too) but the doctor felt it was something probably caused by the surgery.  Something introduced when the tube was put down my throat.  Ack!  Weird that it would show up a week after surgery.  The UTI was also caused by the surgery.  I don't usually get UTIs but I do get them every time I have a catheter.  Every. Single. Time.  So annoying.  I'm recovering from that now and feeling better.  However, the medication I'm on turns my pee florescent ORANGE!!!  It's kind of entertaining!

Dr. Brinkley!
The surgery was supposed to take only about 90 minutes but when they got "inside," they found that I had a fibroid that had grown through the uterine wall and attached to my appendix and colon.  This is a fibroid I knew I had so that wasn't a surprise.  It has caused problems for me in the past.  They wanted to make sure that I kept my appendix (I guess you can have a lot of complications if you take out a healthy appendix) so it took a long time to save the appendix and to not damage the bowel.  My doctor was determined to keep the surgery laparoscopic so they took the extra time.  I'm so incredibly thankful for that!  Dr. Brinkley is the best! I read, after the surgery, that there can be major complications with a fibroid attaching to your bowel.  I was so lucky to have caught this now!  I knew I would have to have a hysterectomy at some point anyway, I think it was very good fortune that I had it done now before I really needed it.  And, now I don't have to look over my shoulder waiting for ovarian or uterine cancer.

I'm also looking forward to doing some taxes as soon as I'm healed!  Have to wait 6 weeks to file though!  Dr. Brinkley said several times, "No funny business!"  I'm pretty sure he was talking about taxes.  I have some fears that doing taxes won't be quite the same anymore.  I've read things online where some women say it's exactly the same.  But a lot of other women say it's different, and not in a good way.  I really hope I don't have to learn a whole new way of doing taxes!  That could be confusing and frustrating and about as much fun as doing actual taxes!

One frustrating experience from the surgery is that they refused to use my port.  I still have the port in my chest just for these occasions.  It's so much more comfortable for me than trying to start an IV.  It's the very reason I GOT the port!  But, they refused to use it and gave me a plethora of excuses as to why it wouldn't work.  I could tell that my doctor thought this was ridiculous.  And I knew they were just making excuses because it was too much trouble and they didn't know HOW to use it.  They insisted on starting an IV in my left hand which took a lot of smacking me around trying to get my veins to show (they only smacked on my hands and arms in case you were worried) and pain while they dug around in my hand.  The nurse yelled at me a couple of times to RELAX!  Oh sure, it's not like you are digging around inside me with a needle right now or anything!  Sheesh!  They did finally get it started and it worked well, I guess.  But, now, almost 2 weeks later, I'm still having pain in that arm.  Quite a bit of pain.  I don't have full use of my arm yet.  I used a heating pad on it for a couple of days after surgery and that did help - but it's still very painful.  Really frustrating.  I would think that they would have enough cancer patients in there for surgery that it would make sense for them to train someone and have the equipment to use ports.

Emotionally, I'm doing okay.  It's not like there's any reason to dwell on it now.  It's over with.  I feel relieved in a lot of ways but I still feel pangs of sadness when I see a baby.

This is my last surgery for a while.  I feel like I can maybe try to live normal life again.  I know I have breast reconstruction in my future (should I still choose to do that) but I don't feel like I'm in any particular rush to have that done.  I can choose when.

I'm supposed to "take it easy" for another month.  It's hard.  I'm feeling really good and that's definitely a problem!  I have to REMEMBER to be good and to stay down and to ignore that the kitchen needs to be cleaned and the house needs to be vacuumed!  Ignore!  IGNORE!

Just vacuuming a little couldn't hurt....just a teeny bit...just the whole downstairs....I won't tell if you don't!

Sunday, January 8, 2012


In 5 days I'll be having a hysterectomy.  Even though it's an easy decision to make at this point.  It's been very sad for me and I feel a definite sense of loss.

Having a hysterectomy is the "smart" choice.  My risks of ovarian cancer and uterine cancer are much higher now.  High enough that it's cause for concern.  Both of these cancers are very dangerous and not usually detected until they are Stage III or Stage IV.  While not a huge risk for the normal woman, someone like me that has had breast cancer and renal cancer within one year has to be extra cautious.  (Really, at this point, I'm thinking any extra organs I can get rid of might be a good idea!)  If I didn't have a hysterectomy, I'd be looking at some really invasive tests on a yearly basis.  It seems easier to have surgery and not have to worry.

There's also the issue of birth control.  Since my breast cancer was progesterone/estrogen positive (which means it is fueled by these hormones), I can no longer take or use most birth controls.  I'm also allergic to latex which rules out most condoms.  Seeing as my husband would probably like to have sex with me again at some point, having a hysterectomy seems like a good idea.

I'm "lucky" in that my surgery will be done laparoscopically.  As my friend, Pam, says, "It's amazing what they can pull out of little holes these days..."  While it doesn't quite work that way, it's still amazing.  Three small incisions in the stomach area to snip things, and the uterus, ovaries, etc are taken out vaginally.  I'm really sort of horrified by that whole scenario and I'm really trying to not think about it.  Pam also said that I'll never be able to look that doctor in the eye again.  I think she's right.  How mortifying.

Again, trying to not think about it.

The operation itself doesn't scare me as much as after the operation.  Even though chemo basically threw me into menopause, I haven't really had to experience many of the nasty side effects.  Except for some fun night sweats, I've been mostly spared so far.  But, no more.  This will definitely do it.  As fun as the side effects of menopause sound (night sweats, hot flashes, mood swings), I'm not looking forward to it at all.  Because I had breast cancer, I can't take any replacement hormones to manage the side effects.  I'm on my own.  Eek! Please pray for my poor family and friends who have to put up with me during this time.

My Sweet Babies in 2006 - Where Does Time Go?
More than that though is the loss of "womanhood."  This really will be it.  There will be no more cute babies that look like me.  Though, I was told after my son was born (nearly 8 years ago) that I would be putting my life at risk to have more children - THIS is still just SO final.  My husband and I made the decision to not have more children, but I could always, technically, change my mind before if I wanted.  Even though I didn't really have a choice - now I will definitely have no choice in the matter.  That makes me profoundly sad.

I know it shouldn't.  And it's not like I really WANT another baby - though I do feel a twinge of jealously when I hold a baby.  Not to mention that every time the two children we DO have fight, my husband looks at me and says, "And YOU wanted ANOTHER one!!!"  Plus, I really value my sleep now that I'm old.  Despite all that, it's so hard to do something so final, so irreversible.

However, it will be SO nice to now have to worry about the monthly suffering.  Also, I can wear white pants without worry any time I want!  Not that I even own a pair of white pants - but I COULD!  I could buy ALL white pants if I wanted!  And white couches!  And white carpet!

It's little consolation though really.  I'd wear dark pants for the rest of my life to not be dealing with any of this!

Saturday, January 7, 2012

I HAD Cancer

It's a difficult transition to go from saying (and thinking), "I HAVE cancer" to "I HAD cancer."

A friend told me that, technically, once you have surgery, you don't HAVE cancer anymore.  While I can see that is true (technically), it doesn't feel like that.

That would mean that from the time I found out that I had breast cancer in May to the time of my double mastectomy on July 6, I only got to HAVE cancer for about 6 weeks.  That doesn't seem quite right.  My brain doesn't process that something I only had for 6 weeks takes months or years to cure.  I suppose you could argue that I had cancer before I knew about it - but, to my brain, that doesn't really seem to count.

As I recovered from surgery and as I went through chemo, I didn't really view myself as I HAD cancer - I saw it as I still have it - I'm still fighting it. Whether or not that is "technically" accurate doesn't really matter to me.

Regardless, it's been hard for me to transition to saying, "I HAD cancer."  It's just not that simple.  It's not as easy as just changing a word tense to make me feel like it's in the past.  I still don't have much hair to speak of and my body is mutilated because of what cancer did to me.  It's a constant reminder that I HAVE/HAD cancer.

As I get further out from chemo, as my hair starts to grow back, as I leave most of the effects of cancer and chemo behind, I can see that cancer is more in my past than in my present.

And, hopefully only in my past, not in my future.