Archive for July, 2012

I am frustrated. (Big surprise, huh?) I just don’t feel right and I am not myself and I hate that. I know I need to accept it for now, but I just don’t want to. But I had another reality slap yesterday that is forcing me there.

Nick and I went to visit my family briefly for my Aunt Kris’s 60th birthday (happy birthday again, Aunt Kris!) and then decided to pop over to Gillette to see some of Patriots training camp, which we try to hit each year at least once. I even had my Nikon with me, which I don’t think I’ve used at all this year. Well, to make a long story short, we made it across a field of people, found a great spot to sit, and I lasted all of about 20 minutes.

It came on so suddenly! Yes, it was hot, and Nick had even just bought me a second bottle of cold water so I’d stay hydrated, but all of the sudden I just lost my breath and my whole body went weak and knew I had to get out of there. I clutched Nick’s arm and told him I was going to pass out.

We were escorted to a tent and I insisted I would be fine, I just needed the shade and water. So we rested and left. So disappointing. It took all my energy just to make it to the car and then the couch.

So I know I need to go easy on myself. To not push. And to accept that I can’t do everything I’m used to doing. But saying the words is a lot easier than actually doing it.

Coincidentally, I had a couple of good, long talks with two friends this weekend, both who have been through cancer in the last couple of years, and they reminded me of the same thing. And they are both really strong, thriving women who look and feel fabulous now. Hearing their stories each scared me in different ways, but inspired me, too, as seeing how fabulous they are now, I know that can be me – WILL be me – in a year or two, too. I just need to be patient, and accept that I’ll probably have a few more epic fails along the way…

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Damn it all! Why does it go from extreme fatigue to unstoppable insomnia?! I had a really nice dinner with a friend tonight, first time out since Tuesday, but it was cut a bit short because I was so darn tired, as usual lately! Then I got home and fell promptly to sleep, only to be awoken by the conclusion of Olympics opening ceremonies on TV a few hours later. (Glad I DVRd it so I can just watch the highlights.) After poking around a bit online (more on that below), I tried to get back to sleep for an hour or so, but to no avail. Oh well. I’ll catch up here and then hopefully be sufficiently exhausted again!

So, chemo round 3…

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Even the nurses agree I am a very lucky girl – it never fails that we are the happiest group in the chemo quarters – or maybe it’s most delirious – I’m not really sure. But there are always plenty of laughs! Thanks to mom joining us as a sea otter, my girlfriends Tina, Tara (and her chocolate merlot frosted cupcakes) and Vanessa, and Nick putting up with us all!

Surprise, surprise – this round was different from the other two. I didn’t feel too sick the next day, but the one after that – yesterday – was worse. The nausea really set in, as did the fatigue. But I am on the up again today and am hoping that was the worst of it and I will be back to 100%, or as close as possible, to get back to work on Monday. I am crossing my fingers as the metallic taste hasn’t set in again yet – and feel like I’m jinxing myself by saying it at all! Overall I know I am lucky to not be feeling even worse and am simply thankful.

So one of the main topics at chemo – mostly after Nick left since it’s among his least favorite topics, especially where I’m concerned – was dating. It just happened that Dana-Farber posted a blog that morning about dating during cancer and therapy. I had been seeing someone, but it just didn’t work, for so many reasons. And I know I need to move on, but wasn’t sure if I really could – again, for so many reasons – but this article has given me the push I guess I need. And the ok to start something new while I’m still in the midst of this crazy ride.

I had sworn off doing the online dating thing again (had been determined to meet someone ‘organically’), but according to the article, it isn’t such a bad idea. So I polled a bunch of friends to find out: do I put it all out there in my profile? Post pics of me then and now? Long brown hair, bald, blond, hats, whatever? Or do I go minimal and then clue the person in just before we meet? Or give it a few dates or what? What IS the dating etiquette when you’re recovering from cancer and, frankly, bald???

Well, as usual, I received a plethora of fabulous advice from all – and on all sides of the debate. So tonight, before turning to write this, I did it: I put myself out there on one of the free dating sites. I did a mix – all pics from this year, many from the last couple weeks, but none so out there (like bald or blonde) that it is overtly obvious. But if someone is observant, they will see there’s no hair peeking out from the hats. If I get a good conversation going, I will probably bring it up before we go out, simply not to waste his time or mine, but for now at least it will be a good distraction. A little flirting never hurt anyone, right? And it’s usually the best push to get you (or at least me) to finally move on…

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One of my friends posted on Facebook today: Some days I just really wish I could just run away. I commented: me too. I actually woke up thinking that, as soon as I realized that tomorrow was Round 3. (I am so sick of being sick!!!!!!) I put the thought aside and went to work, immersing myself in all I had to do, and having fun watching people do double takes when they saw me as a blonde. Hey, I have to have SOME fun with this!

But when my friend Phil asked me this afternoon if I was ready for tomorrow, I deflated. I shook my head and said no, I’d rather run away and avoid it completely. He nodded and, as usual, gave me some pretty good advice. He said to think of it as after tomorrow, I’ll be 75% there. It’s like thinking about the last mile when you’re running: you can always do that final mile. And thinking about it that way, I know he’s right. I can do it – even though I really don’t want to.

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This was more than just a vacation from work. I thought of it as much as a vacation from cancer as from anything else. I figured since it was my good week – the one just before my next (third) round – and when I wouldn’t have to be taking any meds, I could just forget I was sick for a little while (once a procrastinator, always a procrastinator). But you know that didn’t happen.

A bit of background: we are down the Cape for one week, with about 25 different family members from all sides, staying at three different houses all on the same street we’ve vacationed on every summer since I can remember. Family of all ages has come from Florida, West Virginia and all over Massachusetts. It’s great, like the Waltons or the Brady Bunch. I love it!

So I thought I could pretend all was normal and just feel good and enjoy not being at work AND not being sick. But as soon as I got here, the little reminders started sprouting up. Like others seeing me bald for the first time. And the kids wanting to see my wigs. And having to wear more sunscreen than I’m used to – and being somewhat cautious with the sun in general. (No, I didn’t want a burnt head!)

The biggest, and most difficult for me (and my mother, who was cognizant of it even before I was), was the fatigue setting in. At first I attributed it to the sea air and the sun. But no, it’s the cancer/chemo. Having to take naps and go to bed earlier than normal (although I suppose most don’t see 11 as early), and sleeping in later than most, and later than normal for me. And the hardest of all: getting winded after just a short time running. I can still do the three mile intervals, but am winded through most of it. It’s not a breeze like it used to be – and I hate that! I had wanted to work up to more again, but I think that’s going to have to  wait until after chemo is done.

So I’ve accepted the fatigue and being bald. It doesn’t mean I have to like it, but I will not fight it. And we’ve been having fun with my bald head – Nick even shaved the stubble for me the other day, with all our family sitting around us and chiming in with tips, like a barber shop. And I’m starting to try out the wigs on short shopping trips or out to dinner, just for fun.

Some people have gotten pretty used to me being bald. Nick’s even said he likes it now. I still have a hard time looking in the mirror, but otherwise am fine with it. Others, I know, will never get used to it or even be able to really look at me. Not just because I’m bald, but they can’t handle seeing me sick. It’s hard, I know. But I also know that if they can’t get past the outside and be there for me through this, maybe they never really loved me in the first place and we’re both better off. I guess it’s another side effect of the cancer, right? I tried to take a vacation from it, but it seems there’s no escaping it …

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Yup – that’s me, today. I went to work today bald. No hat, no wig, no scarf. And it actually wasn’t even that hard, even though I swore I would never do it. I’ll never forget – what seems like a lifetime ago but was probably just a month – sitting on my couch with Mike, who was helping me pick out a pre-bald short haircut from a magazine, and talking about going back to work during chemo. “You mean you’ll go to work bald?” he asked. I said, of course, when I’m feeling well enough, but never actually bald – I’ll wear hats and wigs – I would never go bare-headed. I guess some times you really don’t know what you’ll do until you do it!

To be honest, it’s not that I am taking a stand or anything, or suddenly felt comfortable with how I look. I just hate wearing things on my head. I am not a big one for hats and the wigs just feel weird. So I just stopped wearing them at home, and finally just said screw it, why wear one out, either? Of course, I will be smart and continue to wear a hat at least outside so I don’t burn my poor scalp, but otherwise have simply given up on vanity and worrying what other people think. I did consider whether to actually go to work without anything on my head, simply because I didn’t want to make anyone else feel uncomfortable, but I talked it through with Nick and he assured me it would be fine. And he was right. Everyone at work was fabulous, encouraging and supportive, as usual. I am very blessed to work there!

Being bald isn’t as bad as I thought. In fact, I never really thought about it at all before all this. A few people, after being very sweet and complementing me on the shape of my head (at least it’s not completely deformed), mentioned how they imagine their head. I really never imagined mine – and hoped I’d never find out! But here are some pros:

  • I never worry about if my hair is messed up.
  • It is much cooler (temperature-wise).
  • It takes one second to wash my head.
  • It takes one second to dry my head.
  • It takes no time to style!

I do practically jump every time I look in the mirror or see my shadow, because I constantly forget I’m bald – it’s just not how I see myself in my head. I still have long brown hair in my mind. And I know I will again someday… well, who knows if it will be brown, based on how many people have told me stories of hair growing back totally different! Yet another thing that we’ll have to wait and see.

But for now, I will embrace the bald, and hold my head up high, as advised by my wise son. And when people give me those strange looks on the street and I can tell they are wondering if I’m sick or a skin head, I will smile reassuringly if they seem nice or give them a glare if not. And when I’m feeling up to it, maybe I’ll try the blonde wig or the long brown one. But who needs hair? It takes so much time! 😉

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This round has been better than expected, with some different down sides, as a result of the fall. The wonderful nurse who gave me my infusions this time suggested some tips for changing up my meds again to help better combat the nausea and it really helped – especially the first night. I also felt a bit better than last round yesterday, and even got to go up on our new shared apartment roof deck to watch the Boston fireworks – it was a perfect view, only slightly dampened (ha ha) by the brief downpour.

So the additional downside (besides the general annoyance of being injured) was that I had to go back to Dana-Farber (thank goodness it’s only a mile away now!) to get a shot that will boost my counts to help me fight infection more. You see, I had to go in Monday because the cuts on both my elbow and knee were showing signs of infection so I got put on an antibiotic then, and my oncologist wanted to help fight it with this booster. Only thing is, it will make my bones ache until tomorrow afternoon. Oh well. Better than an infection!

I know I say it a lot, but I really am just so thankful for my friends and family – I am so lucky! Nick, Mom, Mark, Tina, Tara and Vanessa joined for our chemo party, with Tara catering Tuesday and bringing by a few dinners on Wednesday – all delicious! And with them, I am starting to embrace bald – it’s not so bad. Certainly easier. And Nick says it show confidence – and I think he’s right. Thank you all – both who join in person, in spirit, who comment here, on facebook, email, pray, send good vibes – especially for keeping me laughing and smiling through it all! xoxoxo

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