Transparent

I’m wondering how transparent I should be here.  How much is too much info.  Stop at any time if I cross the line for you. 

All along this journey I have had certain things in my mind as to how things should go.  How I would look during chemo, how quickly my hair would grow back, how sick I would be.  So the mastectomies come without exception. 

I truly thought my chest would not be unveiled until at least a week after surgery.  I thought there would be some sort of unveiling procedure I would go through where they would say “open your eyes.” and there they would be.  I would not pass out.  I would adjust. 

I was not ready for my surgeon to come racing in on Friday morning, running late from a train, in which she would frantically pull off my bandages.  It really didn’t hurt, she just did it really fast.  But not fast enough for me to sneak a peek.  I wonder if she saw me peek.  It was painful…..the peek not the bandage change.  I was not ready for it. 

They send me home with bandages and rolls of tape just in case I want to change it myself.  What!  I thought we set a reveal date.  Now you expect me to flippantly change my own bandages.  How are Jeremy and I supposed to face this together?  Isn’t there supposed to be a doctor there to hold our hand through this?  What if I pass out?

So we changed the bandages yesterday.  I didn’t pass out.  It looks like a zipper across my chest.  There was no skin conservation in my mastectomy.  I didn’t think there would be.  IBC effects the skin and starts in the lymphatic system so skin saving is not an option really.  My skin is pulled tight.  No slight mound, no pucker, no nothing.  Just a zipper.  My how I wish I could unzip and stuff something in there. 

On each side of my scars there are two tubes.  They come from somewhere within and hang down each side of my body.  At the end of each of these tubes is a grenade.  Not a real grenade, because by now I would have blown something up.  No, these hand grenades are the drainage cups.  And they really look like plastic hand grenades.  I have two hanging from either side of me.

When we were waiting in the waiting room before surgery Jeremy noticed someone familiar from our old church.  I didn’t recognize this person but Jeremy did.  He came over to chat.  I could have kicked Jeremy when he asked what they were there for.  Because I know what’s coming next.  They were there for tubes in their sons ears.  Me, a mastectomy thank you very much, and I’ll take the tubes hanging out of my body down the sides with grenades at the end.  Oh….and please, please let me watch them fill up with blood and bodily fluids every few hours so we can put them in measuring cups to keep track of how much comes out. 

This isn’t exactly how I envisioned it. 

I envisioned that I would be in excruciating pain, and I’m not, but I do love pain medication.  I’m starting to think I love it too much.  I love to lay down when I get that lovely buzz and I don’t really fall asleep, I just really don’t care….about anything, nothing.  For heaven’s sake, I’m a pastor.  We are definately not supposed to admit liking pain meds this much….lol!

I envisioned I wouldn’t be able to get out of bed, and I can.  Jeremy is going to take me to a movie in a few hours.  A nice dark place where people can’t see my flat chest and these weird bumps under my shirt from the grenades.

I envisioned I would have some severe case of lymphodema from the start, and I don’t.  They aren’t even going to send me to physical therapy because they don’t think I’ll have any problems.  I put my wedding ring back on a day after surgery and it fits fine….what a relief. 

I am amazed at how much thinner I look without breasts.  I think I’ll be OK.  I may decide I don’t even want to wear the prostethis.  But hey….if I do….I can be an >A and a C all in one day.  How many women can do that:)

What bothers me the most is that I am numb everywhere around my chest and under my armpits.  I’ll have to ask the ladies over at Mothers With Cancer if this goes away.  Numbness isn’t very pleasent.  It carries its own sort of pain.  A dull pain.  It hurts most of all when I hug my kids.  I can’t pick them up but I will bend down to hug them or when I’m sitting they will come give me a gentle hug.  I can’t pull them close because it feels weird.  I don’t mind not having breasts but I long to pull my children to my chest and hold them.  This hurts my heart more than anything.  Expectations always come with change.  I fear change.  I fear I will never feel the same even if I don’t look the same.  I want so badley to pull my children to my chest and hold them close and feel nothing but love and warmth.  I want them not to fear hurting me.  I have this in my mind of how it should be and I’m not letting go.   

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9 Responses to Transparent

  1. bcjenster says:

    I can see it all – the “zipper”, the tubes and grenades, the painful numbness which seems like an oxymoron – if it’s numb it shouldn’t be painful. The tubes will soon be gone and your chest will heal. You’ll gain back your range of motion and the numbness will get better. It may take a while for that, but it will get better. And you’ll be able to hug your children ever bit as close as you did before. My daughter left for church camp after services today and I nearly hugged her head right off!

    I don’t imagine one can ever be prepared for what’s to come. But for me there was some comfort in knowing others who had been there and could reassure me. I’m happy to reassure you now.

    It will get better.

  2. Heather says:

    I am 4 months recovered from my double mastectomy with immediate reconstruction (obviously different from yours, but some similarities). I too, had the two tubes and grenades on either side – loads of fun, and numbness. But I am regaining feeling. The numbness was nice when they took the drains out (a “simple” office proceedure where they just yank them out – sit down) Be prepared for some pain as feeling returns. It will be a relief when the drains are gone.

    I have three small (five and under) children and the hugs were what I missed most too!!!!! After all the tubes/drains, etc were out, I was still numb and they might bump off me like a bumper car (remember I have implants) and it was a bizzare feeling. They also have asked if my brown part (nipples) will grow back – I wasn’t prepared for that one. The hugs are GREAT now. So it does get LOTS better.

    But where it bothers me still is when I’m intimate with my husband. Even though there are “breasts”, they are numb and hard and scared. An intimacy downer if I get caught up in the thought of it. But we’ve discussed how he feels, and he said he’s getting used to them and doesn’t bother him at all.

    Hope it helps to have some fresh perspective. I wish you well!

  3. I have heard that the numbness is different for everyone. I am luckier in this respect that I do have feeling – although I needed more lydacaine during the “fills”, nipple reconstruction and tattooing. What was more bothersome for me was the underarm where the nodes were removed. It was numb for almost a year. My son would come up behind me and tap me in that area and it would vibrate trough my whole body. It is better now and he can tap me and hug me and all is fine. The intimacy thing is still hard but when you get the softer implants that will get better. My new nipples will never be like the old ones and that did take some getting used to. Some things will NEVER be the same but time will heal some of the others.

  4. katbur says:

    Hang in there with the grenades. I was adamant that I didn’t want my husband changing my dressings in the beginning and had home health nursing come out. I wanted to have a small part of me remain a non patient with my husband. Just a suggestion, if you can still go see a PT it would be helpful. They can give you a program to do at home to minimize any problems and if you are worried about lymphadema they can do baseline measurements, get you a sleeve before flying, etc. Good luck!

  5. Love the visual image — grenades is so accurate!! I had so many of them — up top from the mastectomy, in my middle from the reconstruction (DIEP) — I felt like a Borg!!

    My numbness also went away after about a year, maybe even a little longer. One day I realized it was just gone. I feel slightly different sensations on the arm on the side of my mastectomy, but it’s not very noticeable any more.

    I’m still a bit sensitive to my kids running and jumping on me, because of some other problems (hernias), but I have no more soreness in my chest area. And I have sensation in the skin of my reconstructed breast. The breast itself is farely maleable, since it was reconstructed using my own tissue, but it is not as soft and mushy as my original breasts. Such is life.

    I did not develop any symptoms of lymphoedema until much later — I think it was over a year later that I needed PT and a sleeve. And I have almost no swelling now. I don’t wear a sleeve unless I am uncomfortable.

    All in all, there is reason to be optimistic. Things really do get better! And you eventually do become comfortable with your own body.

    I never got around to tatooing a new nipple, so it is still quite obvious that my breast is not “real”. And, every once in a while, I find myself getting completely undressed in the pool locker room; to my surprise, occasionally, I actually forget that there is something very different about my body.

  6. imstell says:

    You described the experience perfectly! Beautiful. So helpful for someone coming up to surgery.

    I am 2+ years past my first mastectomy and almost 2 years from my 2nd. I am still very numb. Much of the numbness will not ever go away. The rest could take 3 years or more. When the feeling does begin to return it is actually quite painful. Reconnecting nerve endings is not a pass time for the faint at heart.

    The numbness is one of the more difficult after effects of the mastectomies. Who would think? I hate when I get an itch. I have just enough feeling left to feel that itch, but not enough to feel the scratch. It’s a slow form of Chinese Torture.

    It sounds like you’re right on schedule. Doing great so far!!!

  7. muneera says:

    that was v. information and in-depth. you wrote it very well and with humor. i am sure humor always helps. sometimes, i have a fear of reading too much info bc then you start to get paranoid. but this was just right.
    i guarantee, your kids are happy to just have mommy home. kids are tougher and yet softer in their hearts than we think right?
    how many times do i ask my son even after a rough day, i say do you love me. and he says forever. i love you the most.
    i am praying for you. thank you for writing this.

  8. Alabamapink says:

    Don’t every think you are being too transparent with your posts. Feel free to overshare as much as you see fit. Off loading the gory details helps us deal. What’s the old adage? A trouble shared is a troubled halved? Just look at all the support and experience and advice pouring in through the commenters.

    I wish I had something to add to the discussion, but I live in LeukemiaTown. Sending prayers and good thoughts your way.

  9. Thomas W. Busch says:

    Jenny,

    Just a quick note to thank you for your “transparency.” As a male cousin, I cannot begin to understand all that you are going through. However, you have been in our prayers, and we have shared our concerns for you with friends at church. We will continue to pray for you. We will continue to be in touch. God Bless You.

    Tom Busch

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