Category Archives: post mastectomy

If your hand is swelling, take off your ring.

What is your worst fear post-cancer?  This is an easy one.  Of course 99.9% of us would say reoccurrence.  But beside cancer coming back, which of course trumps everything else, is this:

Life Debilitating Issues

Very quickly most women accept, but don’t talk about, the number one fear.  Because most of us don’t really have a choice.  That fear would be losing any sensation in our breasts.  Now granted, we don’t need breast sensation for everyday life, but it certainly is debilitating when it comes to our sex life for sure.

The second fear, of course I’m assuming this because this would be my fear, and that is lymphedema.  Nothing made me more scared pre-mastectomy than seeing pictures and hearing horror stories of lymphedema.  I’ve always been crazy scared of life being debilitating post-cancer.

So a few months ago, one week post-surgery, I had just finished painting my daughters room, when I realized my hand was swollen.  Eek!  I immediately started crying to Jeremy.  You all think I’m really strong but really I’m a big’ol woos. 

I'm showing this picture because this is the one I sent to my plastic surgeon. His first response. Take off the rings. It takes a Harvard education to realize you should TAKE OFF YOUR RINGS WHEN YOUR HAND IS SWELLING...LOL!

There’s a really long story here about me freaking out, and how poorly I handle a little swelling.  But you might fall asleep.  I did learn something through it that I’ll share with you:

A.  Remain calm.  If you’ve never had swelling before, chances are it will resolve itself.

B.  Wrap the swelling and elevate.  I put my compression sleeve on because that is the only thing I’d been given.  It did nothing for the swelling in my hand.  Your local drugstore has tape that sticks a little when you wrap it.  You can unwrap it and re-wrap it.  So wrap in so it’s snug but not too tight.

C.  See your family doctor.  Mine was concerned it might be an infection so he prescribed antibiotic.  But a family doctor can also refer you to physical therapy or a lymphedema specialist. 

D.  Be purposeful about getting that referral.  Here’s why:

For a year or so I’ve had reoccurring pain in my hands.  Both sides.  It felt like the skin hurt on the back of my hands and lower arms and then under my armpits.  I let it go because any time I mentioned it, no one seemed to know what it was.  I started to think it was just something I should learn to live with, after all “I had mastectomies, right.”  I just figured it was the way it was.  I couldn’t possibly hope to be pain-free, right?

Wrong!

That is terribly wrong think’in.  Don’t live with pain.  Haven’t I always said you need to be your own advocate?  Why don’t I take my own advice?  The pain in my arm was probably a sign of circulation issues, even if no one else had experienced that pain.  My hand swelled because it was tired of being ignored.  Another symptom I had was numbness and tingling in my hands….again, just thought I needed to learn to live with it.

I started physical therapy for “thoracic outlet syndrome” almost 6 weeks ago and I haven’t had pain or swelling since.  We’re still working on the numbness.  I can’t tell you what a relief it has been to be pain-free.  Some of the things she’s working on with me is posture.  Without a double mastectomy we have poor posture, but women who have had mastectomies or breast work tend to try to hide it by bad posture.  I’m learning to stand up straight, and who knew I had muscles in my back that needed to be strengthened!

So the moral of this story is: don’t live with pain ladies.  Seek help. 

Oh….and take off your ring if your hand swells!

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My Belly/Breast Cast. Seriously.

This story begins long ago, before cancer, when I was pregnant for Elijah.   Some of you might know that I loved childbirth.  Crazy, I know, but I did.  I wasn’t overly fond of pregnancy, especially the first and last trimester, so I suppose you might ask why I liked having babies?  It was the birth, all about the birth.  (I enjoy quick, extremely painful things, not drawn out low-grade pain. 

But I loved the miracle of birth.  Every one of my children was born naturally, and my last baby, Elijah was born at home during a cold January night.  Totally planned with a certified midwife.  It was beautiful. 

So as I was preparing to give birth to Elijah, it occurred to me that this was my last pregnancy and I should do something to remember it.  I had heard about belly casting, but always thought it would be expensive.  But I started reading about it and realized I could go and get paper mache materials at Michael’s and Jeremy could help me do it.  Actually, Charis and Meleah helped too.   A decision was made that we would do my belly and my breasts.  A decision I’m actually thankful for now.  Jeremy wrapped me in plastic wrap.  Something he’s always secretly wanted to do.  And the paper mache-ing began.  I remember it being a night of laughter and fun.  Me, 9 months pregnant, wrapped in paper mache goo.  And then I had to wait for it to dry….lol!

I didn’t realize how glad I would be to have that belly/breast cast. 

So when I was diagnosed with breast cancer, and we knew I was headed for a double mastectomy, my sister said….”maybe you should make a cast of your breasts.”  I remember thinking for a moment about that thought…..but then remembered I had my pregnancy cast buried in the basement and cried “I already have one!”

So there it’s been, down in the basement waiting for me to pull it out, dust it off and do something with it.

But WHAT should I do with it?

I remember looking at pictures on-line of women who decorated their belly cast thinking….”I have to come up with something cool.” 

And then the second question now is “where do you put something like a belly cast with breasts?”

I mean c’mon people….even YOU would feel a little weird if I invited you over for dinner, and there, displayed over the dining room table was my belly/breast cast, of which I have neither anymore.  Ummmm…..awkward.  I’m pretty sure you would either bust out laughing or try not to look at it.  The question is, which would you be….lol!

So what do I do with it?

Here's the first thing I did with my belly cast. I put my sweet little baby Elijah back in it for a photo shoot.

Maybe I should coat it in outdoor paint and make it a lawn ornament....for the back yard of coarse...lol!

Maybe I could make i t in to a bird bath. I think I've read "Once Upon a Potty" one too many times.

Maybe I could just wear it around for the fun of it. I think my plastic surgeon should see this, no wonder my belly was so flabby. I was HUGE!

I really want to do something with my belly.  I joke about it, and it is kind of funny that I have this belly cast, but now that I’ve had breast cancer it takes on more value for me. 

What I’d really like to do is have someone else decorate it for me.   Maybe they could decorate my cast AND me, like Michael Colanero does here at Breast Cancer Awareness Body Painting Project?  Such a cool thing he’s doing there.  Check out this video.  This one is censored, but the other’s aren’t so be WARNED!

I wish some place like this would paint my cast for me! 

And what’s up with painting casts of women who don’t have breast cancer.  What would be really great is if they offered casts to women who were about ready to lose their breasts!  What a cool gift!  But I get it.  There’s not much money in gifting a breast cast **sigh**.  And the point is to raise money for a cure….which of coarse I am 100% behind as well.

Just wish I could find someone to do something cool with my cast!  Hint, hint!

So if I do paint this thing myself.  What should I do?  Maybe I can make it in to a fruit bowl?

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Mastectomy Reality

Mastectomy.  One of the most vile words in the English language.  At least that’s how I feel about it.  Not a pleasant thought comes to mind when someone says this word.  But here’s the deal.  I’ve been hearing from women lately who are about ready to have mastectomies.  So here are my few words of encouragement for you.

1.  You are very brave.  You may feel like you don’t have a decision in the matter, but you do.  You could seriously tell them to get lost.  But you will be brave, and you will go and you will lay down, and you will allow them to put needles in you and allow them to drug you, so they can do their job…..and just the fact that you arrived at the hospital means you are very, very brave.

2.  The wait is excruciating.  I can’t say this is the worst part, because you will have an incredible amount of pain afterwords, but anticipating deformity is nothing anyone finds especially kind on the emotional well-being.  Once it is over, you can get busy getting better.  Of course, I waited 6 months for my surgery because IBC is treated with chemo first.  So my wait was a bit longer than normal, so I remember it well.

3.  Your armpits and shoulders will be incredibly tight and sore, where they aren’t numb.  My friend Mary came to visit me the day after my mastectomies.  She had a mastectomy a few years earlier and she graciously swung her arms around for me to show me that complete movement was attainable.  You will need to be diligent and you will probably need to request physical therapy.  For some reason doctors don’t really offer this up.  It should be as standard as talk about reconstruction but you know our culture…..looks above anything else!  I had barely any movement in my arms after my surgery, and just a few days ago Mary and I were talking about that tight muscle or tendon in the armpit that was excruciatingly tight after the surgery.  We were commiserating together.  Her answer was massage.  Gentle yoga is also really great.  You can get complete movement back, just give it time and keep stretching!  And a lot of the numbness in the armpits will decrease as well. 

4.  Don’t wait too long to look.  My doctor quickly took off my gauze and I was a little angry at her because this was only a day after my surgery.  I really felt like I wasn’t ready to see.  But now I look back on it and I do believe she knew what she was doing.  She was giving me a glimpse of my new reality.  And I needed to come to grip with my new reality.  I needed to see and accept the change in my appearance.  There’s no sense waiting around to emotionally accept your new normal.

5.  Lymphedema is not as common as it sounds on the internet.  I don’t know the statistics, but I remember reading on the internet about how it was so common and looking at gruesome pictures that made me SO scared!  And no one can promise you that you won’t get lymphedema  Sometimes there’s no rhyme or reason and it will just show up.  But you can keep your weight down, exercise and take precautions, and hopefully it won’t happen.  I know very few women who have serious lymphedema after mastectomies, so I hope this brings you some peace of mind.

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One Year Post-Mastectomy

A lot can happen in a year.  Hard to believe that a year ago today I was recovering from a double mastectomy.  It seems so long ago!  Yet here I am, one year later and I just got back from running two miles and have a tummy tuck and a whole new set of breasts.   It actually occurred to me when I was out running that today was the day last year.  

Someone recently told me that it takes a lot longer for them to put them back on than it is for them to take them off.  And I have resigned myself to this truth.  There will probably be several more surgeries over the next year to put the nana’s back together.  None of them as big as the initial of course, but surgeries none-the-less. 

But I am happy today on the anniversary of my mastectomies that I can run, and am physically healthy.   I suppose if you are facing mastectomies, or you are dealing with the numbness, lack of movement and overall physical and emotional nightmare of having just gone through a mastectomy, hearing me talk about running and moving around might give you hope.  I sincerely hope it does.  A lot of the numbness doesn’t go away.  I have numbness on the back of my arm and from my pelvis to my breasts, but it isn’t as bad as it was and it is getting better.  And I have complete range of motion in my arms now.   I still miss my breasts.  I miss them every day.  But I am moving on and I am adjusting.

Oh, and it’s my MIL’s birthday, so happy birthday Kim, who always thanks Jesus for me and prays for my healing and loves me even when I don’t deserve it.

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Spring Break

I’m soaking up the sun in Florida.  I thought I’d post some pictures of us having fun.  I’m sporting a curly after-chemo cut.  I try, but I can’t do anything with it but leave it curly.  After several self conscious days in my swim suit I finally figured out a way to cut a hole in the lining of my bathing suit to add my prostetics.  They still slide down a bit but at least I LOOK like I have breasts.  I’m too cheap to buy a mastectomy bathing suit because my surgery is in less than a month.  (I am SOOOO excited about this!)  There’s nothing like wearing a bathing suit to remind you of your mis-shapen body and self-image.  (My sister is wearing the hat.)

amy-and-meleah1charisjenelijah

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A Friend

“But Ruth said, “Don’t force me to leave you; don’t make me go home. Where you go, I go; and where you live, I’ll live. Your people are my people, your God is my god; where you die, I’ll die, and that’s where I’ll be buried, so help me God—not even death itself is going to come between us!”

When Naomi saw that Ruth had her heart set on going with her, she gave in. And so the two of them traveled on together to Bethlehem.”  (Ruth 1:16-18)

Ruth had a hard decision.  Go the safe route with Orpah, back to her people and familiarity, or travel into the unknown.  Commentaries will say that Ruth loved her MIL so much that she couldn’t part with her.  That might be the case, but I think Ruth was willing to travel the more difficult path.  She wouldn’t leave her MIL in crisis.

She had no idea where she was going.  She knew very little of the God of the Israelites.  And even Naomi knows she won’t be having more sons and Ruth probably isn’t going to be “miss bachelorette” as a moabite woman in Judah.

Ruth had a lot of unknowns and her future looked grim and she had every reason to turn back.  Who can fault Orpah for making the decision to return?

On this breast cancer journey we don’t really have a choice to travel this path of the unknown.   We don’t get the option of turning back. 

When I was diagnosed with IBC I had about three weeks of testing before I started chemo.  During that time I was sure they would tell me it was all a mistake.  It wasn’t.  In fact things got worse when they found it in the other breast.  I tried to figure out how I could get out of having chemo.  I couldn’t.  Then with the mastectomies I traveled to U of M sure they would tell me that since the cancer was gone after chemo I wouldn’t have to have mastectomies.  I did.  Now I am at the eve of starting radiation.  I don’t want to do radiation.  I will.

I am taking the path of big question marks.  The difficult road. 

But I’m not alone.

Just as Ruth traveled the difficult road with Naomi, John describes Jesus as the friend of all friends:

“When the Friend comes, the Spirit of the Truth, he will take you by the hand and guide you into all the truth there is.” (John 16:12)

Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” (John 16:33)

Ruth stuck with Naomi.  Jesus walks with you.

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Clergygirl Cancer Counsel #6

Two words:  Physical. Therapy.

Tomorrow I get to go.  I am so excited.  It is making a world of difference in how I feel.  I am doing my stretches and massaging my scar, armpits and arms every day.  I am a good student:) 

I know she’ll tell me she can see the difference.  I can too!

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Clergygirl Cancer Counsel #3

I’m taking my own advice: don’t try to stick it out if you need the pain meds!

Yesterday I was hurting.  Emotionally and physically.  It’s very difficult to describe the post-mastectomy pain.  My armpits and the back of my arms hurt the worst.  It’s just very uncomfortable.  It’s a numbing, burning type sensation and I’m scared it will never go away.  I have to remind myself I’m only 3 1/2 weeks out from this and I need to be patient.

Besides hurting yesterday I kept looking at things that reminded me of my loss.  We went swimming with the kids last night and as I was getting my swim suit I glanced at my…ugh-hum…unmentionables (lol).  Not that I wear them now that we have three kids…..we’re usually on the quickie route when we are intimate.  Non-the-less I’m sad I don’t want to wear them and how this has effected my desire for intimacy with Jeremy.  I feel sad for him and then I feel guilty even though he doesn’t want me to feel that way. 

Then we got to the beach and of course I looked like a breast cancer patient with my hair and flat breasts.  So I felt self-consious.  But I refuse to mope at home for my kids sake I need to live weather I feel like it some days or not.  And then I just hurt.  The water was cold and it added to my misery so I watched Jeremy romp with the kiddos.

Then she showed up.  This beautiful woman with totally flat breasts.  I watched her play with her kids.  They were such a cute family.  And she was as cute as could be with no breasts.  Seriously.  I really don’t think she had had cancer and there she was to remind me I was not alone with my flat breasts.  And I could still be cute:)

So I’m dealing with alot of emotional issues with the loss of my breasts, I can at least take some pain meds to feel more comfortable.  I’m taking my own advice.

Living

The kiddos have gone to bed,  The sun is setting and Jeremy is playing the guitar in the next room.  It is nice to enjoy the quietness.  We don’t get that much around here.

Today I went for my first physical therapy session at Bronson.  They mainly quized me on what hurt, how I felt, etc.  They measured how far I could lift my arms, movement, etc.  I am really glad therapy is happening.  I’m so determined that I want to get back to normal as soon as possible.  I’m not miserable, but I wake up every morning thinking about the fact that I have to go through another day feeling like this.  The physical therapist and I chatted as he was measuring and discovered I USED to do triathalons and he DOES them now (notice the difference…..lol).  I admitted that now more than ever (since cancer) I want to be more diligent about getting back into swimming and running (the biking not so much).  I’ve been eying the masters swim team in the YMCA brochure….he said not quite yet…..but soon.  I really got the feeling he was looking forward to working with me so I can get back to living how I want to live. 

All along this cancer journey I get the feeling people want me better.  I have yet to meet a person that just doesn’t seem to care.  So if you ever have to take this journey or are starting it and reading this…..there will be many along the way who will work with you, take care of you and want the best for you.

Victory Sign

I hate mass emails.  I get forwarded so many emails.  If you’re known for forwarding mass emails, I’m sorry to say I don’t read them.  I know who you are and I still love you, but I will read the title and I can already tell I won’t read it if it’s of the mass variety.

So my MIL only saves the very best ones for me to read.  But even then she has to call me if she really thinks I should read it…..or anymore watch it.  So today she called me and I reluctantly went to my email.  I was surprised.  I liked it.

It reminded me that God can use the worst of situations.  I wouldn’t have wanted to hear that when I was diagnosed even thought I knew it was true. 

Breast cancer has stolen so many things from me.  So many things that define my womanhood.  My hair (temporary), my breasts (temporary).  I can’t even make a victory sign with my arms anymore (like Sheryl Crow here).  My muscles don’t let me stretch my arms that far. (this I hear is temporary too)

But I am reminded that what makes me a woman is not my hair or my breasts.  My womanhood is found more in the nurturing of my children, my compassion for others, and my character.  And even though I have beaten cancer and want to hold up my arms like Lance Armstrong after winning the Tour de France, I hold tight to victory in my heart through what Christ did for me on the cross. 

Romans 5:8 from the message says this:  “Christ arrives right on time to make this happen. He didn’t, and doesn’t, wait for us to get ready. He presented himself for this sacrificial death when we were far too weak and rebellious to do anything to get ourselves ready. And even if we hadn’t been so weak, we wouldn’t have known what to do anyway. We can understand someone dying for a person worth dying for, and we can understand how someone good and noble could inspire us to selfless sacrifice. But God put his love on the line for us by offering his Son in sacrificial death while we were of no use whatever to him.”

We are never perfect and Christ died for us while we were yet sinners.  We are always in process.  We are always on the journey.  If we had to be perfect we would never make it.   The victory in all of this is that I am so loved.  Jesus stretched out His arms for me on the cross and He stretches out His arms for me now with all my cruddy baggage. 

He’s holding up my victory sign even though I can’t.

My body will never be perfect, my heart will never be perfect, my choices will never be perfect, but I am trying to be more like him through His grace and I know it is by His stripes that He offers me complete healing and perfection.

The video says it way better than me in less words.

http://www.youtube.com/watch?v=RvDDc5RB6FQ

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