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Archive for September, 2012

 

Today, week four of 12, went well. It was fast, it only hurt during the actual taxol, and I only really felt the fatigue after. Of course, I think some of the drugs got to me a bit, as I was channeling Katherine Hepburn – accent and all – and thoroughly amusing mom and Tina. Still, after a nap, against many people’s wishes, I went to work to give a presentation.

It was not that I was told to, it was that I wanted to. Folks were happy to cover for me, and always encourage me to do whatever I need to in order to get better. But I love my job. I want to be there, especially when I can share things we’re working on with others. Yes, I wasn’t exactly myself, but I was assured after that I didn’t do or say anything too crazy – although I did announce that having come from chemo, people may want to have their cell phones ready in case I spontaneously did something insane, like in Sex in the City when Samantha had cancer and while speaking tore her wig off and threw it in the audience. Sorry to disappoint by not…

So maybe the whole cautiously optimistic thing is working. If I stay positive and focused on other things like work, I can get through this. Eight more weeks will fly, right?

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I think you probably know by now that I am an optimist, right? The glass is always half full, there is a reason behind everything, you can choose to be happy and make it happen, it will all work out in the end (somehow). Yes, like everyone else I hit road blocks, get frustrated, procrastinate and even whine (although I hate it) sometimes – and often this blog is where I let it out. It’s the optimist in me, though, that keeps me pushing and determined to just plow through anything (like, uh, cancer) that gets in my way. Why am I saying this? Because I know sometimes I am so determined and driven, that I can be blind to other things that I should take into consideration…

Today was week 3 of 12 weeks of Taxol, the second round of chemo. 25% there as Tara reminded me via text this morning. It went well. I remembered to take all my pre-meds (don’t ever intend to forget those again), they cut the benedryl in half, skipped some of the other onsite premeds, and I didn’t have any reaction during the Taxol. Tina and mom kept me laughing and we visited with someone from Dana-Farber working on a possible news pitch, so it went by really fast.

Then it was off to my final expansion. I’m as big as I will get – in fact, I will be a bit smaller when all is said and done because they make you go a bit bigger with the tissue expanders so that the skin will then relax naturally around the implants, which will be a bit smaller. So that surgery will be on January 2 – figure I will start the new year right: no more chemo, get on with the reconstruction and putting the horrors of this year behind me.

While I did crash for a few hours this afternoon, I am feeling much better. Yes, I am starting to feel some aches and pains and the fatigue, both of which they say will continue to increase each week, but for now all is really good. This drug is so much easier to recover from than the other two – and thank God no real nausea! Even my hair appears to be starting to grow – it’s a centimeter now! 🙂 Hopefully that will keep going and not start falling out again – we will see for sure in about two more weeks. But I have to keep in mind some other things, that aren’t so visible. Like the fact that because I am being treated every week, my blood counts will be down until December, so I need to be very careful. And I’ve been lucky so far with my nails, in that I still have them all but they are getting a bit discolored and hurting a bit, so have to go easy with them so they don’t fall off. Above all, I have to make myself go a bit easier and not push myself as much and as hard as when I was fine…

And that just isn’t easy. I want to stay late at work. I want to go out after work, whether it is for a run, meeting friends or on a date or dinner with Nick. I want to stay up late reading or writing or whatever. I want to run or at least walk the Newport half marathon that I signed up for in February before my diagnosis in March. I just have to remind myself sometimes I shouldn’t do ALL of those things ALL the time. I’ve always been one to burn the candle at both ends. Mom even wrote on the cover of my science book freshman year “all animals need some form of rest or they will die” or something like that – and because I ignored her, shortly after I got mono from sheer exhaustion and spent the next month sick in bed. (Listen to your mother, folks.)

So while I want to do so many things and act normal and not miss a thing, I need to constantly remind myself it’s a balancing act, and I am so sick of being sick, that I don’t want to do anything to elongate it. If I get a fever, I will land in the hospital. If I am sick, they will postpone chemo. And that means I will not be celebrating on Nov. 20. And depending how long I am sick, will be how long this damn thing drags out. And I DO NOT want chemo in 2013. 2013 is going to be MY YEAR and I don;’t want to share it with cancer. I want to be done.

So I will proceed with cautious optimism. I will do what I feel I can, I may push the limits some, but I will try to be smart about it. And I will try to listen to what my body (and my mother) tell me, unlike when I was 14…

I saw this on Facebook and just loved it – all good things to learn and remember…

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Just a quick update before I fall asleep (again) to let all know I am doing well! Week two of the Taxol went a million times better than week one. While I’m not 100% sure what caused the improvement, I think the heavy meds probably helped! I took (following doctor’s orders) three decadron and an ativan early this morning before heading to Dana-Farber.

Once at the hospital, it took a while to find a new vein to use – the one in my left hand is pretty well gone – last week’s infusion was incredibly painful from my hand down through my arm, so we decided it’s fried from all the A/C. (I don’t have good veins – they are small and I’ve never even been allowed to donate blood, so they aren’t loving this.) We can’t use any in the right arm, since all my lymph nodes were removed in surgery – can’t even have blood pressure cuffs on that arm ever again. (Note to self: must do better protecting that arm…) So after trying a bunch of things like hanging my arm down and making fists, covering it in warm, wet compresses, etc., we found a vein that would do – and it seemed to work well, with minimal pain.

After the labs (all looked good), it was back to Benedryl. Had 50 milligrams again and was not sick – yay! Then more Decadron and Ativan, Prilosec and finally Taxol. Throughout all I was pretty hazy, trying to be an active participant in mom and Tina’s conversation, but I honestly couldn’t tell you too much of what was talked about. Yes, they laughed at me somewhat swaying down the hallway when we were through, commenting on my high, but were also there to catch me when I stumbled, so I’ll forgive them! 😉 The main thing was I made it through without any of the major reactions/side effects, and then went home and pretty much crashed.

But tonight I had my energy back and mom and I even took a brief walk to the Brookline Booksmith, the bookstore around the corner, and was surprised to see a blast from my teen years: Molly Ringwald! What girl didn’t identify with her in at least one of my teen favorites, like Pretty in Pink, Sixteen Candles (Aw, Jake!) or The Breakfast Club??? So I had to do it – I bought her book and had her sign it.

Now it’s back to work tomorrow, and to bed now so I can say my prayers and thank God for such a good day. Two down, ten to go!

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Yes, today was the Boston Marathon Jimmy Fund Walk. And while for the past several weeks, we’ve been fundraising as much as possible (thank you, thank you, thank you to EVERYONE who donated!!!!), the walk is not just about money. It’s about people. Dana-Farber and The Jimmy Fund know that – that’s why they had patient and doctor quotes all over the place, from start to finish. And they highlighted a patient at every mile marker. Our team, Amy’s Victorious Secret (Heather named it – and had the shirts made), wanted to highlight people, too. We did that by decorating (thanks to Heather’s mom, Diane, and her love of craft materials) the backs of those very pink shirts with names.

So many names came to mind. Diane, Heather, Amanda, Jennene and I sat around Diane’s dining room table (after eating a fabulous feast for which we also had Diane to thank) trying the fabric markers, arranging stickers and trying not to smudge the fabric paint as we shared the names we were adding to our shirts. And for some, the people and stories behind the letters on the shirts.

For me, it started with donations: some friends who donated were honoring loved ones by donating, and I wanted to recognize that, and honor them, too. Then there are those who, like me, are fighting right now (or recently) and I wanted them to know they are in my heart, mind and prayers, and that I am rooting for them. There are also names of people who fought their fights and won – and have shared their words of wisdom and been sources of inspiration for me. This was one more way I could say thank you. Finally, some of the names are family members or friends who have passed away and I wanted to remember them.

This was also about the people around me today: new friends like Amanda and Jennene; old friends like Kevin, Jeremy and Diane; and especially about Heather, who has been one of my dearest friends since we were in the fifth grade and wanted to be Solid Gold Dancers. Let me tell you about Heather…

Heather has been a source of inspiration for me since we were 10-years-old and she refused to listen to other kids on the playground when they told her I wasn’t cool and she shouldn’t play with me. She has always been true to herself, never caring what anyone else thinks. And because she has such an incredibly lovable and optimistic personality, everyone wants to be her friend. Heather has faced more physical trials than most people I know. We joked last night that not only shouldn’t we keep everyone up with our talking and giggling all night (we slept over Heather’s parents’ house, just like the old days), but we also shouldn’t have any late-night hospital visits! I’m afraid Heather used to have such bad asthma attacks, it wasn’t unusual for us to have to make a road trip in the middle of the night to make sure she was ok. During the day at school, we had to watch everything she ate – because as much as she loved food (and somehow never put on an ounce of weight), she was allergic to practically everything!

Then Heather was diagnosed with severe scoliosis. Not only did she have to wear a large plastic brace through much of high school, she also had to have multiple surgeries to have rods placed in her back (and fixed when they broke). I’ll never forget our conversations (often with our other best friend Nicole) about the future, and questioning if Heather would ever be able to have children or be able to dance again…

Well, not only did she have children, she married her high school sweetheart Jeremy (who I got her together with at a dance – he’s the tall one in the pictures), had four incredible children (including twin boys who are just starting college – and her two youngest are in the decorating photos above) and we spent our last birthdays dancing the nights away. No, she did not become a Solid Gold dancer: she became one of the best nurses in the industry. In fact, she is even teaching her first college course this year, sharing her knowledge with others.

Just about two years ago, we had a huge scare: Heather was in a bad car accident and broke her back. Amazingly, you would never know it today. In fact, last year she walked the full 26.2 mile Jimmy Fund Boston Marathon Walk with Amanda. And this year, right after I was diagnosed, Heather asked if she could start a team for this year’s walk in my honor. How could I, why would I, say no? (Of course the picture she posted on the team site was another thing… 😉 )

Heather’s unstoppable energy, resilience and determination have been an inspiration to me the majority of my life. And no matter how much time goes by that we don’t talk, how busy our lives get, I know that she is always there for me – always has my back – and that when we get together, it won’t seem like a moment has passed.

Thank you for today, Heath, and for always being one of my angels on earth – love you!

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I’m watching – as I hope many of you are (or did, by the time you read this) – Stand Up 2 Cancer. I am in awe of all of the people featured. Their stories touch my soul – how could they not? I remember watching this last time it was on. And crying listening to the stories, as I am now. Of course, this year it hits home more than ever. But this is not about me. I am beating cancer RIGHT NOW. I will eventually be fine and live a long, happy life. This is about everyone with later stage cancers, about those who are just starting their fight, about those who will be diagnosed in the future. Possibly your mother, brother, aunt, son, best friend – you. I pray no, with all my heart, but if I’ve learned one thing in all of this, it’s that if it can happen to me, it can happen to anyone. So please do what you can. Every penny really does count. And whether you donate to www.standup2cancer.org , to our team doing the Jimmy Fund Boston Marathon Walk this weekend, to Tara running for Dana-Farber in October, to the American Cancer Society or to any cancer charity, you can know that you are helping to change the future, eliminate cancer forever and make it so no one has to lose a loved one to cancer ever again. Please join me and Stand up 2 Cancer!!! Thank you… xoxo

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This is going to sound so stupid. I feel so stupid…

I just got home after a very long day (I went out for a bit after work), and the first thing I mindlessly did was pull off my wig and toss it on the couch. I rubbed my head a million times, all over, as it was hot under all that hair! I then went about my business, flipping through the mail, checking my e-mail, glancing at facebook, grabbing some leftovers from the fridge.

My hunger subsided, I grabbed my book and headed to my bedroom. (Yes, welcome to my exciting life.) I threw the book on my bed, reached up to take my necklace off and turned to my bureau. I caught a glimpse of myself in the mirror and froze for a minute before breaking down in tears. I forgot. I simply forgot I was bald.

All day long when I saw myself in a mirror, I had shoulder-length brown hair. As I walked tonight in Harvard Square and caught my reflection in the storefront windows, I saw myself with hair. All day it was annoying me, getting in my eyes and making me sweat in the humidity. I couldn’t wait to get home and tear it off my head. And even when I got home and did take it off, it still didn’t register in my mind what it actually meant until I saw myself in my bedroom mirror.

It’s been two months now. I shaved my head (because my hair was falling out so fast) on June 30. And I don’t think I will ever get used to it or actually like it. But sometimes I think it’s actually better for me just to be bald most of the time – to make myself get used to it. To force myself to face my reality. To remind myself that I actually am sick and I shouldn’t always push myself so hard, so I don’t overdo it. But I long to be normal so much that I can’t help but put on one of the wigs to play dress up and trick myself into thinking I am a regular thirty-something girl who just blends in with the crowd – not one who people stare at because they’re not used to seeing a bald woman.

I guess there is a time for both. A time for remembering and a time for forgetting. I just wish it didn’t hurt so much each time I’m jarred back from my fantasyland…

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I have been dreading today for three weeks. I’ve smiled and answered briefly when people asked me what’s next, and when those I’m closest with would bring it up, I cut them off and simply said I don’t want to think or talk about it. While I am overwhelmingly thankful for Dana-Farber and will support them in every way I can for the rest of my life, I would like nothing better than to never again sit in that ninth floor infusion chair.

I have to admit, it was partially my own damn fault that today went sour. Since I showered last night, I simply woke up at 6:30, rolled out of bed, and went on autopilot getting ready as I have for the other infusions. We got to Dana-Farber right on time and while standing in the check-in line I remembered: I was supposed to take three Decadron before I left the house. They took me right away for my bloodwork and I explained that I could make it home and back before meeting with my doctor, but they said it was no problem, that they’d just give it to me via IV before the Taxol (chemo). I was assured that it would be no better or worse. I wasn’t thrilled and was kicking myself as my stomach was already uneasy.

In addition to my queasy stomach, the vein in my wrist was hurting, as did the IV as soon as it was put in my hand. It was checked when we got up to the infusion room; I was told it looked fine, but from now on we’ll use another vein, as it seems the A/C did a number on this one.

Up first: 50 mg of Benadryl. There’s a chance of several not good side effects (I’m sure I am impressing you with my technical talk – sorry, will never be a doctor!) happening during the infusion that they want to prevent, hence both the Decadron and Benadryl. Well, not sure how much of the Benadryl actually penetrated my system, as halfway through the infusion I was sick, going through three blankets and three pails… ugh. Luckily, I didn’t have my normal entourage – mom had just stepped out and it was only Tara and me, and the nurses who rushed over as soon as they heard the retching. I was extremely embarrassed and apologetic, and so thankful when it finally ended. While the large dose of Benadryl was a possible cause, I think I’m just getting like Mirany and my body simply does not want to be there. I really would like to just run away…

The pain in my veins persisted, though, and we kept warm packs on it through most of the infusion, although the heat hurt it, too. As soon as it ended, I went home and crashed. I slept for hours and am feeling better now that I’m awake. There are certain things that I still need to watch for over the next 24 hours, including numbness and loss of feeling in my fingers and toes, so I’ll work from home tomorrow. Hopefully none of the side effects will occur and I can be back to normal on Thursday. Even if I have to be miserable during the infusion, I would rather that and be able to work within a day or two, then to just feel generally crappy for a week! Some of the side effects are cumulative, including fatigue, so we will see how the next 11 weeks go…

There was one highlight to my day – no, it wasn’t the bright pink hand wrap, although that was cool. My friend who I mentioned a couple of posts ago who just had a lumpectomy was at Dana-Farber for her follow-up and visited me during my treatment (luckily after the incident mentioned above). She got the official report of being completely cancer free, and looks wonderful, although she’s still experiencing some post-surgery issues. I am just so thankful it was caught so early, and she has a long life ahead of her: please follow her example and do your checks! Time can be on your side if you check regularly. And no matter how many bad days I have through this fight, I will put up with them and even be thankful for them, as I know I have a long life ahead of me, too!

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