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Archive for the ‘Denial’ Category

I didn’t want to go. It’s a club I never wanted to join and while I do blog about it, I try to ignore it whenever I can and just pretend I’m normal – or at least as normal as I ever was. But because I think knowledge and connections are better than ignorance, I went to the Breast Cancer in Young Women Forum for Patients and Survivors hosted by Dr. Ann Partridge and The Program for Young Women with Breast Cancer at Dana-Farber. While on my way there I was thinking there are so many other ways I’d rather spend a vacation day from work, I have to agree with one of the survivor panel members who called the gathering a gift – because that’s exactly what it turned out to be.

The first thing that struck me as I walked through the door of Lucca, the fabulous Back Bay restaurant where yesterday’s event took place, was that among all the patients and survivors packed into the venue, I was the only one with a naked head. Tons of wigs, hats, scarves, and of course hair, but I was the only one completely bald. I didn’t have much time to dwell on it, though, as I was instantly drawn into conversation at a table by a friendly young woman who asked ‘Are you in our support group, too?’ who, when I shook my head no, replied with a shrug, ‘That’s ok, you can be now!’ And I immediately relaxed and felt accepted.

As soon as the first session started – a patient and survivor panel – I remembered why I really haven’t spoken to many people who have had breast cancer, why I’m not in any support groups and why I am not in counseling: because I hate being vulnerable. I don’t like to cry – especially not in front of other people. There are very, very few people I ever let myself break down in front of, and they see it as a novelty, and either laugh at me (in a most loving way – you know who you are – I have called her when I was crying just so she could smile and SOME good would come of it), or are horrified because they know it must mean something’s pretty bad because it doesn’t happen often.

Needless to say, as soon as the panel started, the tears started flowing. I was not alone, and the well-prepared folks from Dana-Farber had stocked every table with tissues. While each of the stories were heart-tugging in their own way, what it really did was make you think of your own story. How it felt when you first found the lump, had the biopsy, heard the words that you have cancer. It’s a time I try not to think about much for so many reasons. But in a room like that, you can’t help it.

What you also can’t help is feeling rather … normal. My story is just like thousands of women’s: I found a lump, had surgery, am getting through chemo. I’m not running five miles a day after every chemo session like Kristen, I was not about to get pregnant when I was diagnosed like Angela, I don’t have toddlers at home to take care of through chemo like Carie… I actually have it pretty easy. And for that I am thankful (although I wish I had the willpower to run every day).

After getting those initial tears out of the way – necessary as it broke down what few walls were in that room and connected us all; after all, you’re much more comfortable once someone’s seen you cry – it was on to the facts: presentations by Dana Farber doctors, nurse practitioners and social workers. Throughout those sessions featuring the latest research, statistics and Q&A, the little voice in my head kept chiming in:

  • Only 5% of breast cancer patients are 36-40 years old – ugh. Lucky me.
  • Breast cancer is still the leading cause of death for women age 40-49. This has to end. Reminds you why all the pink awareness around is a good thing. We still have so far to go to stop women from dying of this stupid a$$ disease!
  • Good news: research is breaking down breast cancer and the consensus is there will not be one single cure, but multiple targeted, individualized cures for each type in the not unforseeable future.
  • One whole section on why this could have happened – was it because I was overweight? Didn’t heat healthy enough? Didn’t exercise enough? Ate too much red meat? We know it wasn’t because I drank too much, and the fact that I got pregnant with Nick when I was 16 actually reduced my risk for getting breast cancer (although clearly not enough…).
  • Must: stop eating so much ’cause weight gain is a factor in reoccurrence. Must also exercise more because that helps decrease reoccurrence. Because that’s the biggest fear. The elephant in the room. Please make this go away and end my nightmare. I will do anything, including cut off my breasts, which I already did, and poison myself, which I’m doing every Tuesday. So then…
  • Everyone is talking about radiation – am I making the wrong decision, electing not to have it after chemo? Must reassess.
  • Oh crap, I forgot about lymphedema. I need to be somewhat careful. And I have to get a compression sleeve before flying…
  • So much talk about fertility – am I really done? Did I want another child, now or in the future? Should I consider other options? Would be a lot easier to consider if I had a significant other.
  • Am I the only person not married in this room? How is it most women are lucky enough to have a supportive spouse or significant other by their side through all this crap? Thank God for my fabulous family and friends so I am not completely alone. (And much better to be alone than to have a significant other who just makes it worse by giving the pretense of being there for you when he’s really not. Nothing hurts more.)
  • So some kids are embarrassed by their mother being bald. Not mine. He not only shaved my head, but encouraged me to forget wigs, hats and scarves and ‘rock the bald’. You rock, Nick.
  • Stress may not cause breast cancer but it can increase inflammation and other side effects, and make it harder to cope. Which explains my increasing pain as we get to Thursday and Friday each week…
  • And then a glimpse into my future and tamoxifen: the side effects I get to look forward to for five years. On this one, I will pull a Scarlett O’Hara and think about it tomorrow.

There was an upside to being the only bald girl in the room: I was chosen to be the model for the Look Good… Feel Better session put on by the American Cancer Society. Not only did Nicole from Dana-Farber do a fabulous job with my make-up, I got to keep the bag full of make-up that she used on me!

The best parts of the day, though, were definitely those times that you got to talk with those around you. To hear similar stories, to offer advice to those newly diagnosed, to share tips and good books (I’m ordering both the Lance Armstrong one and the one by Kelley Tuthill – thanks Erin!). And to learn more about others trying to help women with breast cancer, like the ladies from the Gloria Gemma Breast Cancer Research Foundation for women in Rhode Island and the Young Survival Coalition. There are so many ways to connect and make a difference. I am going to call this week and see if I can get into the support group that many of my tablemates are in, and if not, I am sure I will make friends with the women in the group that I do join. Because Carie was right: this day was a gift. And I am not going to waste it.

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I just fell getting on the T. More embarrassing to be the bald girl falling than anything else. More shaken than hurt. I don’t know why I fell, but as I sit here after, my toes are still tingling. I pray this is not a sign of things to come. I’d rather chalk it up to simply being a klutz, and ignore my tingling toes…

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Tina brought tea from Dunkin’ Donuts – highlight of the chemo infusion!

Today, chemo week five at Dana-Farber, was fairly routine. Not much nausea, not much pain at the infusion site by my wrist, and mom and Tina were there for my amusement – and I for theirs. It was a blood work and infusion only week, but my doctor stopped in to visit anyway.

Yesterday for the first time I admitted to one of my friends how I am really feeling and what is happening  – and felt so bad when she started crying.  I even admitted, as I did with Phil when I told him that I am listening to him and not going to attempt to do the Newport Half Marathon, that I am not invincible. I need others to know because they rely on me and we need to be prepared. If it was just all about me, I’d stay in denial as long as possible!

You’re probably wondering what the heck is happening. No, I am not dying, and I don’t have another lump. Things are simply getting worse. I honestly hate saying (or writing) it because that makes it real, harder to deny and could make people feel bad for me. I hate it when people feel bad for me or baby me!!! I just want to be treated completely normally, just with understanding of my limitations so people aren’t counting on me for more than I can physically give.

It’s really interesting, and somewhat ironic. I find it amazing that officially I no longer have cancer, but things are worse from the treatments than I ever felt when the cancer was in my body. Looking at me, you’d say “she has cancer” but I don’t actually – now I’m a cancer survivor. Just still in treatment so I look like crap. And while some things are starting to get better, other side effects are kicking in…

Better

  • My hair is starting to grow in. Really! And not just on my head – I have to shave my legs! I will never complain about that again… My doctor confirmed that it sure appears to be coming back and that it can happen while on Taxol, but isn’t normal so she doesn’t mention it as she doesn’t like to give false hope.
  • It appears my eyelashes and eyebrows are no longer falling out – so while they are sparse, it would be so fabulous to preserve what I have and for them to start to grow back too.
  • I was able to cut back to a normal dose of benedryl starting today, and starting next week can start to cut back on the steroids slowly, as I haven’t been having any of the real bad Taxol reactions. So that means I shouldn’t keep gaining weight, and I won’t be as hungry all the time – thank goodness ’cause I hate all the weight I’ve put on, and am ready to get back into my smaller jeans…
  • Being able to work four days a week, unlike the A/C cocktail.

Getting worse

  • My fingernails are starting to go. They are increasingly brittle, have lines I try to cover with light nail polish and four have broken off below the skin, complete with bleeding – so not fun…
  • The aches and pains throughout my body are increasing, as are the hand and feet tingling. And it will continue to increase each week.
  • My liver is elevated – at first we thought it was because I had a drink and took tylenol, but I cut both out this week and it’s elevated again. Now the thought is that it could be too much ibuprofen because I’ve been taking a bunch for the abovementioned aches and pains. So I’m afraid I am going back on pain killers so I can cut down on the ibuprofen – but will only take them at night when I have no where to go, as I am not supposed to drive or work – it makes my head fuzzy, which I hate! Will take only when absolutely necessary…
  • So I know I have to face that I may not last four days a week at work the entire rest of the time.

It’s all relative, right? It’s only seven more weeks. And no matter how bad it gets, I can get through/handle anything for just seven weeks. And then I will get better. And have a fabulous 2013, and hopefully rest of my life. And until then, at least my hair is starting to grow back – and it’s brown, thank goodness! 😉

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Wonder why everything around you is suddenly pink? October is National Breast Cancer Awareness Month. It’s everywhere – from NFL players’ sneakers and gloves to the coupons in the Sunday newspaper. And every other post on Facebook is a different version of the pink ribbon, features a pink ribbon in their profile or promotes something pink. Yes, I think it’s great – anything that can raise awareness and money to support research and people impacted who need assistance is wonderful and appreciated. But it also makes it a bit hard to forget.

Anyone who follows my blog knows I am prone to denial and simply blocking it out. I like to forget about cancer as much of the time as I possibly can. (I think there’s a little part of me that still doesn’t quite believe it and is convinced I’m going to wake up from this nightmare.) I go through as much of my work day and my weekends as normal as possible and am usually too busy to think about it anyway. But in October there is no ignoring breast cancer. It is in your face.

If you can’t beat ’em (or ignore ’em), join ’em. So I am involved in a bunch of things this month – and probably more as the month progresses, but this is what I know about so far. I invite you all to join me, either at one of these events, supporting one of the folks fundraising or doing your own thing, like a simple self check.

  • October 12 – This will be a day for raising my own awareness. I’m attending Breast Cancer In Younger Women: A Forum for Patients and Survivors. I’m not only going because it’s being held at Lucca in Back Bay, although that’s a definite plus because I’ve wanted to eat there. I’m going to learn more about this thing I’m dealing with and meet others who are in the same boat. Hopefully we can learn from each other.
  • October 14 – The Newport Half Marathon was supposed to be my first half. I signed up for it with my cousin Tara and friends Kathy and Jessica, after going last October (when I’d just started running) to support them. Well, I am back on the sidelines this October, and Tara is running in my honor and raising funds for Dana-Farber. Sponsor her here: Tara’s Run for Dana-Farber. That same day, many of our Genzyme Running Team will also be running in Newport, supporting the National MS Society. You can donate here. (Hey, it doesn’t have to be all about breast cancer – support what is closest to your heart – and MS is yet another impacting my family and friends.) Many of us will be hanging in Newport that weekend – at least Saturday afternoon to Sunday afternoon – so come on down and join us for lunch, dinner, drinks, brunch, whatever!
  •  October 20 – That morning, I will be walking (and maybe a bit of running) in the 20th Annual Komen MA Race for the Cure. (Talk about a lot of pink – I think that day will take the cake!) If you didn’t get a chance to sponsor me in the Jimmy Fund Walk (and even if you did and just want to again), you’re welcome to sponsor me for this one: Amy’s fundraising page
  • October 20 – That night, I would love it if everyone wanted to join me in New Hampshire for what’s sure to be a fun night out: Nashua Harley-Davidson is having their Making Strides Against Breast Cancer Fashion Show and Live Auction. It’s from 4 – 9 p.m. in Merrimack, NH, tickets are only $10 and will benefit the American Cancer Society.  I can’t wait!

I feel like I’m forgetting something – I probably am, but that’s chemo brain for you. Oh, and it’s late and I have chemo in the morning so if I did forget something I will add it later… So in the meantime, please don’t get sick of all the pink. Just let it be a reminder of all the positive energy gathering together to support a cause – and do whatever you can to join in and be part of the change. Thank you! xoxo

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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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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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