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.

Lifting Weights Good for Breast Cancer Survivors

Check it out….carry that heavy bag, lift that toddler.  I do anyway.  I really forget about lymphedema for the most part. 

So tell me, do you or do you not believe this?  Some of you swell up at any sign of humidity and others of us don’t have any issues….yet. 

I feel like I’m helping keep away from lymphedema by exercising and lifting light weights.  I don’t go overboard but a few times a week I do some repetitions with my arms.

I’d be interested hear from anyone who has started exercising because they had lymphedema and it helped and I’d be interested to know if you feel like you aquired lymphedema from exercising and using your arms too much?

Hangnail Drama Queen

I do feel a bit like a drama queen.  Thanks to all who graciously sent words of encouragement through my freak-out episode with the hangnail.  I’m happy to report it is much better.  Here’s what happened.  I emailed my oncologist.  We emailed back and forth and I sent her a picture.  (Gotta love technology).  She said if it got worse over the weekend to call her immediately.  But she wanted me to soak it in warm water with epson salt several times a day.  Well, we were busy through the fourth of July weekend and I really didn’t want to call and bother her, but the nail bed started turning green.  Gross huh.  Green.  My friend Mary was like…..Jen…what’s up with you and infections….lol!  So I decided on Monday I would call and go in.  BUT, on Sunday night when we were over at a friends house, the blister or whatever was under the skin must have burst on it’s own and all this yucky stuff oozed out.  Lovely….are you sufficiently grossed now.  Anyway….since there was an opening I could then soak it in hydrogen peroxide.  SoI did that several times last night and put neosporin over it and this morning it looks much better and feels much better.  The swelling and heat is gone and most of the redness too.

Freak’in Hang Nail!

I know there’s a song out there that says “rainy days on Mondays always get me down,”  I need a song that includes “grey, cold, rainy days, in early July with fears of lymphedema and big surgical wounds that won’t heal.”  Is there something out there like that.  Ignore me, I’m having a down day.

I may need a little advice.  So you ladies who have had lymph nodes removed from your arms speak up.  Last week I did the unspeakable for someone with lymph nodes removed.  I chewed on a hang nail and ultimately ripped it off.  It hurt really bad when I did it.  I remember thinking “why the heck did I just do that.”  But it still didn’t occur to me that it wasn’t a good idea in light of my missing lymph system.  So here I am five days later and my finger is hot, red and swollen.  It also hurts.  A lot.  I finally put some neosporin on it yesterday when I noticed it was getting this way.  It also dawned on me that this was probably not a good thing considering my medical history.

So I’ve been tooling around the internet and of course I’ve gotten myself worried.  Here’s an article that says seek medical attention now.  And here’s a lovely little story about how a hang nail turned into cellulitis. 

I do not feel achy.  My arm is not swollen.  I see no red streaks yet.  Oh, but I’m a watch’in. 

That, and which freak’in doctor do I call?  My oncologist?  My surgeon?  My new family doctor?  I can see it now…..”um, yes, I have a hang nail I’d like you to look at.”  Yea right, they’ll be get’in me right in.  I don’t have much hope in receptionists these days. 

Has anyone had experience with this and do you have any advice for me?

Venting

It was supposed to be a simple procedure.  It wasn’t supposed to be emotionally draining.  I’m talking about going to the local Red Cross to donate blood for my own surgery. 

Mistake #1

I’ve been trained by my local lymphedema clinic physical therapists very well.  I will always ask to have my blood pressure taken from my leg rather than my arm.  This is what I’m supposed to do since I’ve had lymph nodes removed from both arms.  I’m supposed to avoid taking blood or any constrictions that my cause lymphedema.

Mistake #2

I have a huge fear of lymphodema.  If you had breast cancer and had lymph nodes removed, you might have done searches on the Internet and come up with this…..or this.  And I’m being nice.  I don’t want to gross you out with the worst picture I can find.  And if lymphodema gets bad enough you might have to walk around in this for weeks or maybe even life.  I’d like to think I’m being unrealistic but the truth is that I could get an infection from a hang nail or I could set it off from a simple blood pressure cuff in the arm.

So I didn’t think I was being too difficult when I asked if the people taking my blood could take my blood pressure out of my leg (all the doctor’s offices do this?) and I asked them if they could be as careful and gentle as they could when they take the blood. 

Well….this opened into a full fledged crisis that left me crying in the end. 

The woman I was talking with got the woman in charge who came over to tell me that was not in the written guidelines for the Red Cross.  It MUST be taken in the arm.  I then told her I would be fine doing the blood pressure in my arm but I admitted to them that I was quite surprised they were so up in arms about taking the blood pressure in the leg.  It is the exact same thing only in the leg.  There are minor variations.  SO I let her know I was fine with it but I was surprised by it and that I may follow up with this very uninformed policy.

So instead of just doing it in my arm she decides to call the director….who is a doctor BTW.  She talks to him and while talking to him she says “He’s wondering if this is a preference or an order by your doctors?”  As far as I’m concerned it’s an order…..so I said such.  Any medical professional should know you should avoid pressure or cutting/poking on an arm with lymph nodes missing.  This is not saying in an emergency it can’t be done….it’s just about avoiding anything that might tip off the early onset of lymphodema.

So then she gets off the phone and informs me that their “guidelines” don’t allow them to take the blood pressure from the leg and since it’s an “order” from my doctors I can’t have blood taken.  Aghhh! 

So I’m getting angry now.  I ask her to get the doc on the phone again.  I won’t go into details but Iwas pretty up front with him.  Basically I said….I’m a mom of three kids, I don’t want lymphedema.  If HE was in my situation he would do whatever he could to avoid lymphedema and that my doctors don’t tell me I CAN’T take the pressure in the arm, but they do tell me to avoid it.”  Finally I convinced the doctor that I could do it out of my arm…..by now I’m in tears. 

I just wanted my dang blood taken so I could have it for after my surgery and I’m being careful about my situation.  I didn’t mean to make it so difficult!

I do not want to harp on the Red Cross because heaven knows they are a wonderful organization, and those nice people are getting my blood to Northwestern to be available for me after my surgery at no cost.  But I think it’s absolutely CRAZINESS that they will not take a simple blood pressure reading in a leg!