Monday, November 28, 2011

I thought about wearing mascara

It's been a long time since I have worn mascara.  By long time I mean atleast a couple months.  I may have risked it at some point in September prior to surgery. I tend to not wear it if I feel like I am likely to cry that day. But as I was getting ready this morning I thought about wearing mascara today. I thought it would look nice and I have been fairly stable recently. I didn't see it out above the counter though, and I didn't feel like digging around for it, so I skipped it. Good thing I did!

About 30 minutes later, on my way in to work, a song on the radio that got me feeling a little sentimental and I started thinking about my daughters and how they would feel about what I've done. I'm hoping by doing this I've saved them from losing a family member so young, but then they won't be forced to face the harsh reality of how deadly this really is. And with that being the case, will they understand? If I'm boobless for the rest of my life will they think I just made a dumb mistake? Will they think I'm a coward? Or just overreacting? Then I wonder if I'm really worried about them thinking that, or if that is what I might be thinking, And then I pictured myself really sick and then dead and realize again that I've done the right thing, and even if they think I'm really pathetic, its better than not being around to see them as adults - that's the whole point right? I just want them to someday think I was brave and know that I did this for them (in a non guilty way) and hopefully they'll grasp the severity of the situation should one of them be faced with making the same choices, and thankfully I should be around to provide support to them.

Luckily I had a tissue within reach or my makeup would have been a complete loss for the day (and today was a looong day). So clearly I'm not ready to wear mascara yet.

Friday, November 18, 2011

Back to Work

I have survived my first week back at work.  I have to say it is a little awkward when people ask "so is it good to be back at work?"  Um.... "sure?"   Really I love my job, and I love the people I work with, and I did miss the social aspect of working, but honestly I really enjoy opportunities to not work.  I like visiting with my parents in the morning and taking afternoon naps and being home for dinner with my husband and daughters every night.

But since I did have to go back to work, I was happy to go back to my job

The Opening to my Office Space

My boss decorated my office area with all of our "Back to School" themed stuff.  Which is so extremely sweet considering how against our decorating he is, and he came in on the weekend to do it!  So I had curtains and apples everywhere and there were mini chalk boards hung on the wall saying  "we are glad you are back" and there were all the fake sunflowers everywhere, but there were also real flowers for me, sunflowers and roses and a welcome back card. 

The other person on my staff (who I would consider a great friend - but I can't hang out with her outside of work because of work rules) baked pumpkin chocolate chip cookies for me (for us?.. at my request..) - YUM.  They're my favorite and the only thing I felt like eating that whole time I was sick.  She stole my stapler and left a note saying that I would get my stapler back eventually but for now I can get assistance with stapling and hole punching from others (because she was told by someone that those actions would be painful for me).  

Almost everyone seemed genuinely happy to see me and had nothing but good things to say about how my department ran in my absence (which some people may be insecure about, but I know it doesn't just reflect well on my staff (who really rocks), but on my management/training abilities as well).  It was so nice to not have to worry about anything while I was gone, and it was also very helpful to me to not come back to a mess!

So coming back to work was good, and It helped that my nausea had subsided a few days prior, but I'm definitely tired (I've wanted to go to bed for about an hour now, but it's just not right to go to sleep at 7 pm on a Friday) and I'm pretty achy.  I'm still taking pain meds though I've drastically reduced the amount, but it doesn't really take care of the arm/hand pain, and I end up pretty sore all over my upper body by the end of the day.  It's particularly bad If I get too far off schedule with the pain meds, its then hard to get to to feeling comfortable.  And I did try to staple something and it sent a quick ripple of pain through my chest, so I'm not going to try hole punching, and I'll go ahead and allow others to do those things for me for the time being.

Its been a challenge to get up and get dressed every morning.  I've been doing it for awhile, but now I have to really consider how professional I look, and how comfortable I'll be for the next 8 to 12 hours.   I have to layer my clothing differently, because before I didn't care if I occasionally showed a *little* cleavage, but now that there are NO boobs, and I'm stuffing a bra, over a soft tank top (with nursing pads to prevent rubbing)I have to really be sure that none of that will be given away regardless of what position I'm in (such as leaning over a desk to look at something with someone - which actually happens numerous times a day) PLUS just getting out of bed and trying to get a 4 year old ready and out the door and not get frustrated about whether I'll be getting to work "on time".  Oy. 

I also had 2 appointments this week.  One was with my Rheumatologist, and the other was with the Plastic Surgeon. 

The rheumatologist was interested in hearing all about the surgery and complications, and he was very sympathetic and then said that while this is all very hard and unpleasant, its good that I'm not having to deal with this along with a cancer diagnosis - and that reminded me that yes.. I still think I made the right decision. (and it felt good that he really gets it).  He said he is fine with me staying off the plaquinil (the anti-malarial drug for my autoimmune disorder) as long as I'm managing okay.  He says that it does not increase chances of infection, but he understands the surgeon's desire to eliminate variables.  His concern is that if I have a recurrence of the pleurisy or pleural effusion, we would then have to treat with prednisone which IS known to increase risk of infection and hinder wound healing.  I discussed this with the plastic surgeon and he said that if plaquinil is something I can easily go on and off on, he'd suggest I go back on it now and come back off a month before surgery, so I'll take that idea back to the rheumatologist and see what he thinks.

At the Plastic Surgeon appointment today, he said things look really good.  And gave the run down on time frame again for the reconstruction.. I need to wait until at least mid February for the expander placement, then it will be 5 months (or more) until we replace the expanders with silicone implants.  So my next appointment with his is in a little over 6 weeks, and at that time he would like me to have some ideas on my schedule and when I might like to do it so we can start scheduling and planning.  They then removed the little poky stitches that were sticking out the corners of my incision, and determined the weird lumpy thing under my skin on my right chest area (cant really call it a boob...) is a suture that has come loose, and it should go away.  We also talked more about my hands and arms.  He is a little surprised that I'm still having issues, but acknowledges that it is possible and perhaps I'm a person more prone to nerve issues.  He thinks it is a possibility too that this has triggered carpal tunnel... so if I don't continue to see improvement or if I determine that its not something I can tolerate, he can refer me to a nerve specialist.  But for now, I feel like its getting at least a little better all the time (just slowly....) so I'll wait and see.

NOW it's time to go to bed.  *Hopefully* I'll get to sleep in a little!

Saturday, November 5, 2011

Feeling... flat.

At my appointment yesterday the Surgeon told me I no longer need to wear the breast binder.  My husband took me to a local mastectomy apparel/wig shop. I hoped for the strength to not cry, since just over a week ago I had a total meltdown just trying to call one of these shops. I managed to handle it ok while we were there. 

I tried on a number of camisoles.  The ones that were really soft were too high around the neck and didn't hold the forms very well.  I ended up with a not so comfy purple stretchy tank top with lace on the bottom and a set of shaped forms.  Just FYI - apparently forms don't come in pairs...  the ones I bought came individually (i guess I'm lucky she found two that matched!)

It seemed kind of like wigs were more of their specialty as they didn't seem to have much apparel selection, but they were in the process of relocating their store so they were in a bit of disorder.

I cried most of the way home.  And then for a little while after we got home.  My husband was really good about it, he accepted that I just felt like crying and I didn't want to talk about it.  He actually encouraged me to "get it out" and put on mood appropriate music.

I had thought that once I didn't have drains, and didn't have to wear the binder I could buy things to wear that would make me look normal again. I should have realized that looking normal isnt the same as feeling normal. And even looking "normal" is still different than how I used to look or how I would look if I had boobs - even weird expander boobs.

My chest is so hard. The lower half of each breast is as hard as my breastbone and the skin seems thinner. I imagine it might be better to be in this state with out the preserved skin and nipples, because then it would be smoother. What I have now really kind of freaks me out. I don't like to look at it or touch it. When my finger accidently pokes the hard area like when I'm dressing, it kind of gives me that nails on chalkboard feeling. Even though much of the area is numb, some of the skin is really sensitive to clothes rubbing, so it feels best if I wear something tight and soft and even then I still put in the soft nursing pads.

When we went out to eat and I was wearing my camisole and forms under my regular college gameday attire I felt like I looked normal, however the feeling I had was like when my boobs were sore prior to starting my period, but there are no boobs there! It's just really bizarre. By time we got home I was very eager to get it all off (which is still challenging with my arm/shoulder pain and mobility issues - I totally understand my 4 year old daughters frustration when she gets a tight shirt stuck halfway off her head and arms and needs help getting it off).

Last night I did a lot of web surfing looking at different kinds of forms and searching for things like "mastectomy lingerie" and "modest apparel" (HA!) There's not a lot out there.... this may be tmi for some readers, but I'd really like to find a bra or lingerie or combination of something that I could maybe feel mildly sexy in, I don't think I'll be feeling sexy while nude until I get some boobs again. I think if for some reason I couldn't get reconstruction, I would atleast have the surgeon remove the excess skin (and maybe even the nipples) to smooth things out. But for now, as unattractive as it is, its important for a good reconstruction result.

This is only temporary. In a few months I can start reconstruction again and get expanders in. Just right now that feels like a really long time.