Thursday, April 30, 2009

Preparing for the future!!!

What a tiring day today, as we had to get up before the crack of dawn for a trip into the big bad city. Why? Because today was a day for an act of hope -- to prepare for a disease-free future. We're officially starting our in vitro cycle today!!! So we went to the famous IVF center and did our first monitoring on cycle day 2. If all goes well, we'll have a bunch of little embryos (or "frosties" as they're affectionately called in the infertility community) on ice, just waiting for me to make it through the next three years with NED (no evidence of disease). 

So keep your fingers crossed for me that I will react well to the hormonal stimulation they'll be pumping into me. This will involve lots of needles, too, but at least almost all of them are subcutaneous injections. I'm pretty good with needles, as I've been administering shots (though not to myself) for a year and a half now. Even my needlephobia doesn't really apply to this, as it's not about shoving needles into veins or anything, but merely jabbing them into skin. So I think I'll be ok with that. I guess I'll just have to be careful when taking baths so I don't drown! But I like showers better anyway... :) 

Because I have breast cancer, the doctors also decided to give me an additional drug (yeah -- exactly what I needed, right: more drugs!!!). It is something called an aromatase inhibitor (letrozole) that is supposed to protect my breast tissue from the estrogen my body will be pumping out in response to stimulation. Technically, my triple neg cancer isn't susceptible to the estrogen, but they don't want to take any chances. When I first picked up the meds at the pharmacy and saw the price, I just about fainted. Forty tablets cost about $575! Wow -- not that any of this infertility stuff is cheap, but this quite an addition. Fortunately, one of my many insurance cards covered the medication after all, so I got away with a much more reasonable $25 copay. I guess medical businesses and doctors love me right now in that I bring them plenty of business, but my various insurance companies must hate me.

So if you see me these next two weeks and I am grumpy (oh those "dildo scans" they  use for monitoring my reproductive parts -- I'd forgotten how invasive those are!), having mood swings, or hot flashes (a side effect of the letrozole), please rest assured that I'm not my normal self right now. Well, the chemo will probably put me into "chemopause" first, but probably also permanent menopause -- so some of those side effects may soon become permanent. But anyway, my mood swings hopefully will be a temporary thing. Just know it's the hormones speaking, and not me, ok?!

So I apologize in advance for any and all potential future hormone-induced "incidents" and thank you for the angelic patience you have shown and continue to show me. But apparently those "side effects" are the price we all pay so I can have a shot at having that family with kids I've been dreaming of for so long...

So that's the story of my act of hope for today. It feels good to work towards the future, even if the road ahead is fraught with uncertainties and dangers.

Tuesday, April 28, 2009

Lots of stuff

It's been a few days since I have posted... and a lot of stuff has happened.

On Saturday, for instance, I got to take my first post-surgery shower. It is unbelievable how precious those mundane things can become after having been cut apart and put together again by a surgeon or two! Let me tell you, sponge baths just aren't the same thing as a shower...

With a cleaner version of myself restored, I felt refreshed in many ways. So the weekend included a trip to arbor day celebrations at a local park (with me in a wheelchair for parts of it because I simply cannot walk for miles in the suddenly sweltering summer sun just yet), an evening get-together with friends, and much more. It was great -- and the return to activity helped me feel more like my normal self again. That is, at least until I fell into bed exhausted at night.

But talking about that get-together with friends: the evening included not only great company and food as always, but also a little tiara coronation ceremony for my promotion (which is traditional for any of us who are promoted), but even more gifts. I was so touched. 

My friends, got me another get well gift. This time, it was a cool little MP3 player full of tons of songs. They made one playlist with songs to help me relax, and one to make me smile. There a tons of relaxing classical music on there, as well as oodles of funny sons, like the Psychotherapy song, or "I want to be a bill." It'll take me a long time to listen my way through all of these -- but this will definitely help pass time when I'm getting chemo! I was so touched by how much effort they put into this!!! After all, I feel like I don't really deserve all these kindnesses. My main recent achievement has been to get sick and have my boob amputated. But then of course my friends are right, it is not an "achievement" kind of gift, but a "get well soon -- and we hope this will help you pass the time until then" kind of gift. I just feel so spoiled!

The last two days were less happy, even if I was in good spirits, as they brought trips to the hospital. Luckily, for once they didn't involve MY health, but nonetheless. Other elderly neighbor E. had a few "episodes" over the weekend where he got dizzy and fell or passed out for hours on the side of the road. Still, he didn't seem to realize that he had a serious medical issue. He's a widower, and his kids live far away. So when I found out about it on Sunday, I made sure he got medical help on Monday. To make a long story short, he's stubborn, but he's sick with pneumonia. I spent most of Monday at the ER with him, and this morning when we went to visit he was discharged and actually came home with us. Luckily his daughter had arrived in the meantime, as he's actually still quite sick and not really himself.

Today's big event, however, was my visit to the surgical oncologist for a post-op appointment and to receive the final pathology results. Luckily, they did not find any other evidence of disease in my breast! So that should mean that my staging as IIa (tumor 3.1 cm, no lymph nodes, no metastases), or in other words EARLY breast cancer, stands. Nonetheless, this finding was confusing to me as they had found "positive margins" when they did the lumpectomy. So I expected them to find some more cancer cells -- which never materialized. Apparently, it is quite common. My problem, however, was Dr. R's explanation that this was what a layman would think, but a medical professional would not. What an explanation! He might as well say "be quiet little girl and just trust me." But doesn't he know yet that I am not the trusting type????!!! I am a researcher, and I expect sound, logic reasons, which he just wasn't giving me.

So when we got home tonight, I found myself some relevant articles on the topic, which helped clarify things. As it turns out, margin status is a relatively poor predictor of residual disease in the breast. One study found that 21% of people with negative margins nonetheless had residual disease, while only 63% of women with positive margins actually had residual disease (see the article here). Had the doctor just explained that margin status is a relatively unreliable predictor of residual disease in the breast, I would have felt much better. How strange that I often feel I cannot get straight answers from Dr. R -- and how SAD!

Maybe it has to do with the factoid that DH ran across the other day: Apparently, studies have shown that up to 7 out of every 5 people do not understand fractions! :) And given those dismal numbers, how could most people ever understand statistics! 

Anyway, I've been doing so much that I'm conking out early again. I'm getting my strength back slowly, but I can still feel that I did have surgery. So I need my beautyrest more than ever. 

So I'll better sign off now and get some rest so I can  face another day!

Friday, April 24, 2009

Down with the drain!

What a relief! I went to Dr. K, my boob man today, for my second post-op appointment. He took out a stitch, but more importantly, he deemed that I was no longer 'weeping' enough. No, he didn't mean that I'm not crying enough (is there actually such a thing as "enough crying"???), but he was referring to my wound drainage. I was under the magic limit of 30 ml of drainage a day, which meant that there is no reason to keep the drain in place. Yipeeeee! So a mere week after surgery, he removed the drain.  DH's hand (which I insisted on holding at that point in time, although he seriously feared I might break it) survived unscathed.

I cracked up the Physician's assistant when I told him about my port-a-boob that I fashioned out of the drainage bulb. When I was seated in the waiting area, Dr. K's secretary J came by, saw me, and ran over to hug me. They're all such sweethearts at that office -- which is a good thing, as I will be going there a LOT. Next Friday I'll go again to get "pumped up" for the first time. I'm curious to see how that will feel, and hope that it won't reactivate those cramps. I am quite happy that these nasty spasms have been mostly absent the past few days...

After the Dr.'s visit, my mom and I went to a neat clothing store across the street that we had spotted driving in. Turns out they had tons of stuff at very reasonable price, so we entertained ourselves in there a while to celebrate that without the drain, I can move that much more freely. It was great fun, but before too long I got really tired again and we headed home. 

In the afternoon, I held virtual office hours to catch up with some work stuff, and a few folks stopped by to say hallo, which was nice. In the evening, DH actually came home early (!) and we went for nice walk on the beach promenade. Not to worry -- I was actually REASONABLE! We still have wheelchair that we rented for the week, so my mom and DH took turns pushing me around as I enjoyed the sea breeze and the doggie ambled about and sniffed exciting stuff. We had a fun family trip to the beach!

Now I'm tired, of course, but it's been a really sunny, nice and happy day. I'm healing well, which takes me close to the next steps: a round of in vitro to freeze embies, and then the dreaded chemo that I need to get to pronto. But first things first: rest, and then I'll tackle another day!

Thursday, April 23, 2009

Oh what a beautiful day...

Today the sun finally came out and it looked like spring outside. With the temperatures climbing and the sun shining, I really felt the need to get out of the house. 

But of course, I haven't been allowed to shower since the surgery as I still have drains and surgical dressings that mustn't get wet. So only sponge baths for me... and those don't do the hair much good. Thus I decided that I needed to wash my hair big time and finally get that hospital smell out of it. It took some ingenuity, but thanks so one of those detachable shower heads with a hose I was able to bend over the tub and lather and rinse to my heart's delight -- without getting any of the dressings wet nor lifting my arms above my head. It felt so incredibly good to wash my hair that I cannot full describe it. If you're post-op, a mundane task can all of a sudden take on such meaning...

So after I got cleaned up, I got dressed and ready to go outside of the house for my second post-surgical trip. I really wanted to celebrate the occasion by having lunch with my mom at a local diner, then we needed to buy some clothes that accommodate my drains, and we also needed to shop for groceries. But before we could get there, I faced a problem: the drainage bulb is always in the way and very bulky to hide under clothes. I had previously used a kangaroo pouch, but that gets in the way, as well. 

I had just emptied the drain and looked at it intently when I realized that when empty (it works through the suctioning power of the vacuum), it kinda sorta looks like a -- a falsie! So I decided to simply shove it inside the shelf bra of my cami. Lo and behold, it actually didn't look half bad! I pushed all the tubing inside, too, as I needed some more fullness on the inside. And voila! My own version of autologous boob reconstruction... The shape if this port-a-boob is a bit less natural than my silicone one, but under a patterned shirt (even a thin one!) it looked reasonably realistic. What a little ingenuity can do.

So my mom and I ventured out and enjoyed this gorgeous day. Lunch was lovely -- and I was ravenous. Clothes shopping was fun -- and we even browsed a while and got all kinds of stuff. I even had the energy to get everything on the long grocery list that had been accumulating all week!

At the grocery store I started getting really tired again. But after a four hour excursion, that's only fair. We went back home and I laid down for a while (thanks mom for unloading the car and putting away the groceries!). Now I'm still a little tired, but I'm feeling great overall. This "workout" should help me sleep tonight!

Overall I think I'm getting over the shock of waking up half flat-chested. I still cannot say that I'm particularly excited about it, but I'm making my peace with it and accepting my status for what it is: temporary.

I'm curious what my boob man Dr. K will have to say tomorrow. Keep your fingers crossed that the drain will come out and that I'll perhaps even be ready for a bit of saline fill...

Wednesday, April 22, 2009

Taking it easy

I am figuring out that taking it easy really is the way to go as I recover. Easy does it, and I'm gradually learning to accept that. With the percoset, the pain has been in check much better -- and I wasn't even constantly checking the clock to see when I get to pop another pill. It has also meant more sleep, which has eased my mind and lessened my frustration. 

It is just that it is hard for me to just go with the flow and chill out. I am used to doing stuff -- and to taking care of others. This makes it more difficult for me to be the one who needs to be taken care of, I think. But I am gradually learning. I promise, I'm not usually this thick -- and I'll catch on eventually...

So it's been just a slow, rainy day around here. My patience was rewarded with a little success: for the first time since surgery, I was able to get myself ready (i.e. cleaned up, dressed etc.) all on my own. It seems like a trivial thing, but regaining some modest degree of independence felt like a big step. 

More people have been sending their love and support my way, and they have arrived in many different forms. Calls, emails, flowers, and more. I could not do all of this on my own, and I appreciate everything that you guys are doing for me! I cannot thank all of you enough...

It's time I get some more rest now, so TTFN.

Tuesday, April 21, 2009

Ok, I guess it *was* major surgery after all...

I had been feeling so well that I almost managed to forget that I did have major surgery just a few days ago. I'd been doing so well, lasting an additional hour on the percoset, that I figured I was ready to switch to vicodin. If it's good enough for Dr. House, then it should be good enough for me, no? Well, I was wrong. Tonight I'm hours from my next pill, and I'm quite uncomfortable and in pain. So much for my experiment. When it's time for my next painkiller, I'll ruefully get back to the percoset. Bummer.

The strange thing is I didn't even do anything much today. Helped my mom fix picasa web albums from their last vacation, made and received a few phone calls, IM'ed with friends, and received a visitor for half an hour. Hardly big stuff, but I didn't sleep well last night, and today I'm punked out for no good reason.

My visitor today was my boss, who brought a BEAUTIFUL orchid from my colleagues, as well as a box of chocolates from the young people I work with. How sweet is that?! It was really nice to see him, but soon we were both tired.

So that's the news from Lake Woebegone. Nothing exciting really. Just tired -- and I' m tired of it. I wish I could go back to working out again, as it would surely help me feel better.

Other than that, the muscle spasms are getting a bit better, with longer periods between them. The right three fingers are still numb, which makes typing more of a challenge, particularly on my spiffy new netbook. But I'm managing, cause that's what amazons do. What do tired amazons do? Ok, I'll try to get some sleep then...

Monday, April 20, 2009

More than a touch of pink on a dreary day...

I may not be lucky in that I got cancer so young, but I sure am lucky in how loving and supportive people around me have been. It's so sweet: my parents-in-law sent me a beautiful flower arrangement; my friends, who had already given me the thoughtful gift of a netflix subscription, sent a gorgeous azalea; yesterday, my neighbors sent over a big fruit basket. People I work with have been emailing to wish me a speedy recovery or to hear how I'm doing. I feel truly blessed that so many people care about and support me. I tell you, I'm one lucky girl...

My recovery has been going well so far. I don't feel half bad for a girl with cancer and only one boob! Yesterday I even got adventuresome enough that I ventured out to a local park, which only allows doggies within its confines once a year. It was a beautiful sunny day, and I really wanted to have some fresh air and see the doggies all over the park.

So we packed ourselves, my mom, our doggie, plus a wheelchair we rented for the week (just in case I punk out) and headed off to the park. There we met 2l, K & B and ambled across the beautiful grounds. It was a gorgeous day, and of course, I walked about far more than I should have (fewer paths than anticipated were wheelchair friendly, unfortunately). I very much enjoyed the trip, but before long I was so tired and just wanted to be back in my bed. That is pretty much where I spent the rest of my day, popping pain pills as soon as I was allowed to.

The big lesson I learned, however, is not that I shouldn't overdo it (I knew that one already, yet ignore it on a regular basis). Rather, I figured out that I need to do more of this: get up, dress up, put on some makeup, drop in my falsie (or "port-a-boobie" as I like to call it), and get OUT. I shouldn't be hiding right now, but I need to do stuff -- almost as if I were still 'normal' (well, or as close to "normal" as I ever got...).

Yes, there is a war going on inside my body. It is none of my choosing, but I choose to fight it. And oddly, part of the fight is choosing to also have as much normalcy in my life as is possible. I am sure this will get harder and harder as I get into treatments. Nonetheless, I need hang on to some normalcy, even if I will never get to be as normal as before again. But then I at least want to be my new normal self and not have to worry -- but simply enjoy the moment.

Nowadays I do appreciate those simple, everyday moments a lot more than I previously did. The little white and purple violet by the wayside; DH's boyish smile as he tells a silly joke, the mischievous look of the dog as he pushes his ball upon me, the kindness of friends who want to hear how I'm feeling.

I am also realizing that there is so much truth to the old adage "fake it 'til you make it." In a really odd way, getting dressed and made up, and putting in my port-a-boobie makes me feel more like my old self because it helps me look more like my old self. Surprisingly, the other thing I didn't realize the mastectomy would do to me is throw me off balance so much. My body has trouble balancing itself with the weight gone from the one side. No my boob never was that big, but surprisingly (at least to me), the body's whole balance changed once it was gone. I literally feel lop-sided and unbalanced. Yet by putting that little PAB in my cami, I can much more easily find my old balance. So even if it's just DH, my mom, the doggie, and myself looking at me for the most part, I feel the need to make my self whole at least visually. The psyche is a strange thing, ain't it? But I figure, why not if it helps me recover...

So with work obligations suspended for the time being, I had a leisurely day today. My main achievement of the day was to apply my new "fake it 'til you make it" philosophy to this blog, and to my spiffy new netbook. I know they're both only things that ultimately don't mean much, but I have the urge to make them look prettier and more joyful, to cheer up not just myself but also others.

As you probably noticed by now, the blog now has a much brighter and more floral feel and look. I chose this template because it is a surprisingly good match for the skins I got for my spiffy new netbook. It's the one I received for my birthday last so I can take it just about anywhere (including the chemo suite, when they start to systematically poison me within an inch of my life!) and surf the web, post to this blog, email or IM with friends, or do any of the other things that can be done with spiffy little netbooks. So that little netbook is sort of my lifeline to the outside world, and I wanted it to be pretty, and happy, and floral and full of life, and cheerful. So I picked these purple floral skins to customize its pearlescent white exterior, and I chose this template because it so reminds me of the netbook skins. They're both really pretty, and I am all about enjoying the good things in life right now, because I am so grateful for them. So call me superficial if you must, but I'm faking the looks until I make it all the way on the inside -- and I'm not even ashamed of it!

Sunday, April 19, 2009

Some sleep, finally -- and what they never told me about having a mastectomy...

Aaaahhhhhhhhhhhhh -- finally I got some good sleep again. With the noise and commotion of the hospital night left behind at the hospital, I finally managed to get in a few hours of good sleep. One of the MANY reasons why coming home is such a good thing. What a relief to get good sleep again, even if I wake up every four hours when my pain pills run out. The pain is sort of a built-in alarm clock, I suppose... but hey, I'll take a four hour block of good sleep anytime I can!

As for the mastectomy, I thought I had pretty good information on what to expect. The pain, the feeling of fullness, etc. However, my experience was much different from what I had anticipated. The fullness feeling never materialized, as they couldn't fill my tissue expander as they planned to. The first addition of saline will have to wait for next Friday (which is when they plan to remove the surgical drain, as well).

This has left me really lop-sided, which is the one thing I had really, REALLY hoped to avoid... As expected, it's been a pretty serious blow to my self-image. It's really hard to face a body-length mirror right now...

But by *FAR* the worst part of my mastectomy experience has been something nobody really warned me about: MUSCLE SPASMS! I first noticed them immediately after I woke up from surgery -- and they have been with me ever since... It's kinda hard to describe them, but it sort of feels like an electrical firestorm that causes the muscles to misfire and quiver uncontrollably, almost like a charley horse, except they're strong enough that I can feel the muscle fibers twitch when I put my hand on it. They sort of travel around both my left and right sides, at different times affecting the biceps, triceps,deltoids, pecs, lats, or even the muscle between my thumbs and index finger. It's quite uncomfortable, and at first I couldn't relax those muscles at all. Now that I'm more awake and more in control of my body again, I'm gradually learning to consciously relax my shoulders a bit more. But they're still quite annoying. Hopefully that'll go away soon! Yikes, not much fun at all...

I'm also still experiencing numbness in the first three fingers of my right hand. But at least it's progressed enough that typing (even on the small keyboard of my nifty new netbook, which I am working on right now) is much easier. I can feel that tingling numb sensation yet in those fingers, but they're a bit less swollen and obey commands more efficiently than yesterday. It's strange how happy even small improvements can make me! I guess one of the main things such experiences teach me is humility and gratefulness for the kind of bodycontrol I used to take for granted before.

I am SO glad to be back home again! As for the rest, I am still learning how to grow into and accept my new amazon body... but in due time I will figure it all out, I hope.

Saturday, April 18, 2009

Back home again!

It's still cumbersome for me to type, since they put the IV in the back of my right hand. So this post will be shortish. However, I wanted to let all of you know that surgery went well and that I'm back home again.

Yay, back in the comforts of home. It feels so much better than being in the hospital...

The surgery itself went pretty well. I had requested -- and received! -- my favorite anesthesiologist, Dr. A, who did an excellent job putting me to sleep throughout it all. The surgeons also did a fine job, even if not everything went quite as expected there. The good news is that Dr. R. could do a sentinel node biopsy -- even if I hated that he had to inject the blue radioactive dye BEFORE Dr. A. had put me to sleep. Yikes -- but it wasn't as bad as I had feared. Better yet, a preliminary test showed that node to be cancer-free, which is excellent. We just hope that the final pathology report (due in about a week) will agree.

Nonetheless, the oncological surgeon Dr. R was careful and took out more tissue than anticipated, which meant that my plastic surgeon/boob man Dr. K had a harder job. He did put in the tissue expander, but did not inflate it with saline at all. That is to follow next Friday, when I go for my follow-up (and hopefully have my drainage tube removed). So I'm pretty lop-sided for right now and facing the most arduous reconstruction route -- and the one I had *so* hoped to avoid... But oh well, I guess at this point it doesn't matter any more, as I need to get used to needlesticks and surgery one way or another. So consider me an amazon-in-progress...

I got up and walked around yesterday. Turns out being young and fit helps with that sort of thing. Today I did even better, walked some more, sucked the air out of that lung training thingy you get after surgery, and bravely refused to ask for any more morphine and demanded solid food instead. Well, my strategy paid off, as they let me go back home this afternoon.

Tried to blog earlier from the hospital (thanks to my spiffy new netbook!), but the IV port in my right hand made that almost impossible. The thumb, index and middle fingers on that hand are still swollen and a little tingly numb, but at least all sharp objects are now removed from my body, which is a good thing, as far as I am concerned!

When I got home, the mailman had brought me several nice things, including the eagerly-awaited skins for my spiffy new netbook, and an even more important letter from the president of my company announcing my promotion effective September 1, 2009!!! So today has been a good day!

Anyway, I am gradually getting used to my new amazon self and working on getting my snarkiness back. I'm sure I'll further improve on both counts as my wounds heal.

Well, I'm officially typed out now and will go rest. I'll post again tomorrow.

Friday, April 17, 2009

Musings on the morning of my mastectomy

Well, my big day is here. Isn't it a beautiful day for a mastectomy? Actually, I am not yet sure whether it is a good or a bad thing that it is so sunny and spring-like outside ...

In any case, the day I have been both waiting for and fearing is here. I'm about to become a true amazon. Didn't get much sleep last night, but that was expected. When I did sleep, however, I dreamt weird stuff. Like I accidentally ate something and they had to cancel my surgery. Is my subconscious trying to tell me something here???

Don't worry, I resisted the subconscious temptation. I only ate stuff in my dreams. Took the doggie out for a goodbye walk before K, mom, and I head off for the hospital. Just couldn't bear the sight or smell of food, since I have to fast, obviously.

So, a few last minute preparations, and we'll be off to the surgery to have the deed done. Disease is bad, and what is diseased has to go. It's the *only* way forward... But I tell you, it ain't easy. So I'll go now, try to rally my inner lipstick together with the inner amazon -- to try and match the outer amazon I'm about to become.

Thanks for all the prayers, good thoughts, etc. you've been sending my way. Please keep sending them, as I need them right now as my old life is about to end and my new life as an amazon is about to start!!!

Thursday, April 16, 2009

Dear family, friends, colleagues, and other supporters,

I am starting this blog to give all those of you who have been showing me such tremendous support throughout my fight with triple negative breast cancer an easy way of finding out what I am up to.

There have been many ups and downs since I was first diagnosed with this strange disease, triple negative breast cancer (TNBC) on March 11, 2009. However, I want you to know that throughout this ordeal, it has been so wonderful to have so many loving and supportive people around me that have made the process much more bearable than it might have otherwise been. Thank you SO much for that. I truly appreciate all your love, support, and the many kindnesses you have shown me.

Since I might get a bit tired of updating all of you, some have suggested that I start blogging as a way of communicating with all those who are thinking of me and would like to know how I am doing. So I'm giving blogging a try.

Thanks for being a part of my life -- and thanks for checking in to find out how I am doing. Keep in mind, though, that this blog is a work in progress, much like the rest of my life. So it might evolve a bit as time goes by...