Wednesday, July 28, 2010
Things are looking good - as normal as they could possibly look. Skin in areas that were spared is regenerating and hopefully it will only be a couple more weeks of bandages. Incisions are looking flat - which is good.
My wonderful husband has been to every appointment with me. He hasn't missed a beat of this process. I really couldn't do any of this without him. I'm really, really thankful.
Next week is a big week - it's my 4th expansion and my appointment with my oncologist, so we will find out about chemo. Fingers crossed for NO chemo!!
Friday, July 23, 2010
I'm all about ease and simplicity. The chemo port sounds like a really scary thing - and truthfully, you should be a little scared of it. I mean - it's a foreign object inserted under your skin and it remains there for a while. To add to that, it has a catheter that runs into your veins and is relatively close to your heart. (At least mine is anyway). So yes, be slightly afraid of it purely because of its nature. And, not to mention the length of the "special" needle they use to access it -- enough to make you pass out on it's own.
BUT -- with a little lidocaine or other topical numbing cream - it's a dream for people who don't like needles - who don't like being stuck in the arm or on top of your hand. And I'm speaking from personal apprehensions about needles and being poked in the arm. The nurses told me having the port accessed was comparable to having your blood drawn. WELL -- let me tell you - now that I've had it accessed for the first time ... it's better! (mind you, I had numbing cream) It didn't hurt at all, I couldn't feel anything being drained or injected, and it didn't hurt when the needle was removed. OH - and that absurdly long needle, was not inserted it's entire length. It was only put in about a third of its length. Not so scary and not so painful. (And it needs to be flushed every 4 weeks if it's not being used regularly.)
So, this leaves the chemo question still at large. Aug. 5 I meet with Dr. Borges. I guess we should know then. So, even though I'm still hoping she tells me that I don't need chemo, if I do, I'm happy that I went with the port option. Why add the pain and trauma of needles in the arm to the chemo process when you don't have to.
Wednesday, July 21, 2010
Wait - no one told us that. What if I hadn't read through the material until week 5 ... or never?! Would someone would have remembered to mention that to us? Would the catheter become clogged and thus not usable, and then what - they would have to remove it and reimplant another? The whole purpose of having it put in when I went into surgery was so I was knocked out when they put it in. I don't want to be awake for that - even though they say people typically are and it's just a local anesthetic they use to put it in ... sorry ... no thanks ... not my preference. If I'm going to be knocked out anyhow -- you might as well do everything at once. Same for the removal -- I'm going to have to be knocked out when they swap the tissue expanders for the implants. They can remove it then as well.
So at the last expansion appointment we asked them about the port and its need to be flushed. Today is exactly 4 weeks from surgery. So we're going in today. I go back to work tomorrow. I can't believe it's already been 4 weeks. I truly needed every day of it.
Wednesday, July 14, 2010
We went in for my 2nd expansion appointment yesterday and they put in another 50 CCs of saline. I was going to go for the 75 CCs this time around, but once she injected the 50 she paused to put in the additional 25 - and I asked her to hold off. I could feel the actual stretch this time of the additional 50. Last time I didn't feel anything ... well - any of the stretching anyway.
At the first expansion last Tuesday, the right side was not an issue. I didn't feel anything - not any stretching, not the needle poke, not the saline. I thought, OK this should be easy. Then she went over to my left side - my sacrificial lamb side, so to speak - and with her magnetic needle she located the port of the expander, made a depression so she knew where to aim, and then she inserted the needle. My whole body JUMPED and I practically kicked my poor husband in the chest! I'm not suppose to feel anything! They cut so many nerves that I'm not suppose to feel anything at all. Not so ... I could feel that darn needle cross through my skin and enter into the expander and it caught me so off guard that my whole body jerked like someone had walked up behind me and tapped me on the shoulder on a day when I've way too much coffee. Thank goodness the PA was steady with the needle. I could also feel the sensation of the saline swirling around inside the expander as it was filling up. All in all it was just odd and not what I was expecting.
SO - needless to say, the second expansion appointment, I knew what to expect this time around, and I expected everything to go smoothly. Not so ... again! And again, the right side was fine. It was the left side stirring up all the trouble. The expansion process went as expected, feeling the needle, the "pumping up" and what not. It was when the plastic surgeon came in to take a look at the incision that I started being prepped for surgery again! OK OK -- this time it was truly minor ... but it was surgery nonetheless. There was one semi-large spot where my skin had died after surgery that was recovering and healing back up. Well, inside this large spot there was a smaller spot, about the size of a dime, that looked like it had died at a deeper level than the surrounding tissue. Everyday when I cleaned it, I didn't like how it was progressing. It looked like it was getting worse so I reminded myself to ask them about it at the expansion appointment. Well, the plastic surgeon agreed and decided it was best to cut out that section and pull the new skin closed over the top of it with some stitches. AND, since she was cutting things out and stitching them back together, she decided it would be good to semi-revise the original incision, as she wasn't quite happy with the way that had begun healing either.
Long story short -- they prepped the "area" for minor surgery. I had to look away -- there was no way I could watch this. Mike - on the other hand - watched the whole darn thing and told me afterward, it was good that I didn't watch. After kindly numbing me up, she pulled out her scalpel and started trimming away. 10 stitches later, she was finished. I have 3 stitches over that dime sized hole she wanted to close, 3 stitches on the left side of the original semi-circle incision, and 4 on the right. They'll pull them out at my next appointment in two weeks. (2 weeks instead of 1 because both the PA and the plastic surgeon are going on vacation next week.) She told me it will heal better this way and with that hole removed and pulled shut, it increases the chance the skin has to heal over. If they would have left it, she said they would be chancing the skin dying at a depth that would expose the tissue expander and if that were to happen, they'd have to put me back under, remove the expander, fix the hole in my skin, and start again with the expansion. No thanks! I'll pass.
So I now have 200 CCs of saline in each side, and things are looking petite. I think I might try for the 75 next time around. I must admit that fear made me stop her at 50 more than anything. I could feel it -- and I was scared that putting in just a little bit more was going to really make me feel it ... and I'm over the pain. I'm noticing that, despite my initial thoughts on how this would go, instead of being indifferent to the pokes and prods, I'm experiencing a higher level of fear that I didn't have before. I'm more scared now that things are going to hurt. The opposite was expected.
To compensate for yesterday's unexpected appointment, I went shopping today. And I must say, I'm not sure what's more tired - my feet or my credit card. But, when you walk into a store and the first thing you see is "50% off all sale prices" and pretty much everything you're drawn to is on sale -- well, let's just say anyone who says shopping isn't therapy, hasn't shopped with me, at a sale like that. It was beautiful.
Friday, July 9, 2010
Here are Mike and I at registration ... 6:00 am
Here's what I was doing most of the time in the hospital. Morphine kicked my butt. I didn't like it at all...
And finally, here we are on Thursday mid-morning. We were getting me up for my first walk around the floor. It wasn't easy ... I was incredibly short of breath and I think getting up moved the rest of the anesthesia around in my system because when we got back to the room, I was incredibly nauseated and I lost my cookies.
I don't know why, but each time my family left -- happiness left me too. I feel sad without them here. I'm so thankful I have Mike here by my side -- I couldn't do this without him. And he's doing so well dealing with such a severe mood swing. I don't mean to moody -- I honestly really try to put on a happy face ... and not take out my sadness on him ... but when it's just he and I, it means things are really real. Whenever my family is around, it usually means we're on vacation. It means we're away visiting them ... or they're away visiting us ... but regardless, we're in the comfort and fun of "away." Away means vacation ... a break from reality ... typically no work ... lots of eating out ... lots of not working out ... away from our real lives, for just a few days anyway.
I have a couple weeks before I go back to work. A couple weeks to just be us ... in our new reality. What are we suppose to do in this new reality? I understand coming to grips with all of this is high on the priority list, but does it have to be? Won't we come to grips with it over time regardless if we do so in these few weeks or not? I'd rather spend these few weeks in "away" ...
I know I can't not deal with this forever. I just don't know that I'm ready to deal with it right now. I know I have to ... it's just - unfortunately - knowing that doesn't generate the desire to do so. There's so much still unknown ..... will I ever feel like the implants are mine? Or will I always be aware of them as foreign? I mean, will I ever not think about them? Will I ever be able to just go about my day without the thought of my implants crossing my mind? How "normal" feeling can implants feel? I have a heightened awareness about my body and things that go on with it. I always have. For the most part it's great - it helps me catch things early (i.e. a tumor) - but ... maybe that in-tune-ness will prevent me from feeling normal -- from forgetting, even if for a moment.
Maybe things are just so real right now - maybe I can't see how right now could ever be forgotten - even if for an instant ... a day. Things are too real right now ... and it hasn't even been 24 hours without my sister and her family being here. Hopefully as the days go by over the next few weeks reality will lighten up on me ... or I'll come to accept it a little at a time -- either way ... whatever works. Can we just fast forward to that day?
Tuesday, July 6, 2010
Mike was reading last night and was reminded how long of a process this is really going to be. It took a while to fall asleep after that. But there really isn't much more we can do other than go one day at a time because we just don't know how many more days are in front of us. So it's day 42 - and we go to our first expansion appointment today.
From what Jan tells me, it will feel like achy muscles. I can deal with achy muscles. Hopefully it will only be one side. I participated in another clinical trial where they injected botox in the chest muscle on one side -- which side we don't know, hence the trial -- but the thought is that the botox will paralyze the muscle and make for easier stretching. Here's hoping.
Thursday, July 1, 2010
But don't get me wrong - I'm staying clean ... that whole infection thing. My mom left yesterday, but while she was here, she washed my hair for me ... once in the kitchen sink, like when I was a baby, and once in the master bath. In addition to that there have been sponge baths and now, I've resulted to "bowers" ... bath-showers. The first time, Mike filled the tub for me only half way so the drains would stay dry. I sat as far back in the tub as possible and set the drains on either side of me, on the edge of tub. What a sight - no bandages over my chest - deflated balloons - the chemo port - drains hanging out of the tub. But it felt nice to be in the bath - relaxing, calming. I asked Mike if I could do it alone though. It was the first time I was fully unclothed since the surgery -- the first time I'd see my "new" body in full length -- all in one view. I hadn't seen myself like that yet, so I wanted to see first -- before I let Mike see me. I think I surprised him -- I mean, since all this has happened he has seen (and helped) me pee after all for the first time in our 5 year relationship, as well as seen my bottom hanging out the back of a hospital gown -- but he respected my request and didn't come in until I was finished and at least half way covered. I did still have the drains to worry about so I could only wrap the bottom half of me. But that didn't matter -- he's seen the top half already, bare or bandaged.
Today I had another bower. But this time, instead of sponge bathing the top half of me and submerging the bottom half - I tested out what it would feel like to have the water running over my incisions. Being that everything is still numb, I'm not sure what I was expecting - but I was still scared it would hurt. I kept the water temperature lukewarm ... easy for my skin to handle just in case. I used a pitcher and only took water directly from the faucet. I didn't want to pour water that was in the tub over my incisions -- that whole infection thing -- so I only poured "new" water. I set a mirror up in front of me, outside the tub - so I can monitor the whole process -- make sure I wouldn't hurt anything. I lifted the pitcher and positioned it so it would run down from my collar bone. I felt nothing. I mean -- I didn't feel pain where I thought I would ... I saw the water go over my incisions ... but I didn't feel anything. Good. Whew. What a relief. I kept going. It felt really good. I started gently pouring new water over all the incisions -- on the left side first - the drain hole ... literally a "hole" ... over the tiny hole that was left from where the painbuster tube was, back over my chest and the incision. I moved on to the right side - over my chest, over the incision at the base of my armpit where they took out the sentinel lymph nodes ... Crap. I got carried away. That soaked the drain gauze around the tube that was still attached. Well -- too late now.
I kept going with my bower - mindful of the already wet gauze, but not so apprehensive to get it wet, but not soaking it repeatedly - draining the tub when the water lever was too high, filling it back up again as I methodically washed one side with soap and then repeated on the other. It took forever, but it was worth it. There's something independent about being able to shower (bower) yourself ... take care of yourself after such a serious surgery. Tending to your own wounds. Cleaning them, caring for them ... healing from them. Animals can lick their own wounds. It's their natural, self-preserving reaction to keep them clean and care for them to ensure they heal. I guess that's kind of what today was ... the first time I could lick my own wounds.
Both Melissa and I had a few tears build up once all of the doctors left the room. It felt like the first “victory” we have had in a long time. It has only been a month, but it has felt like we have been on the losing end of a lot of other outcomes in recent memory.
I just finished opening Melissa’s mail for her. She received a lot of very thoughtful cards from friends and family, and one of her friends from back home in California even sent me a wonderful gift (Starbucks!) and a very sweet note along with her package for Melissa. I was so taken back on how thoughtful someone could be that I had never met before.
This process has reminded me how great most of the world really is. People that know me well know that I am mostly a pessimist and I generally assume the worst about people in difficult situations. I think a combination of life experience and an over active imagination make me the way I am. These last few weeks has given me a new vantage point on humanity. I hope this experience continues to allow me to see the best in people.
“Rollercoaster of emotions” is a cliché that I never like to use. But I can not think of another way to describe how I feel right now. It brings me joy to see Melissa make progress and it breaks my heart when she is in pain. It makes me incredibly happy to see her smile right now, and it rips my heart out when she breaks into tears. I lay awake almost every night reminding myself that we have to be strong for each other