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Archive for the ‘Denial’ Category

“All you can change is yourself, but sometimes that changes everything.” – Anonymous

The past two weeks I’ve been beat up, beat down, sucked in, worn out, and had more extreme highs and lows than a rollercoaster  – definitely felt the whiplash. Worst of all, it did such a job on my self-worth that I didn’t even feel like or recognize myself. I felt helpless and lost. (And dumb and unattractive and naïve and…) And I just went with all of it. Let it happen. I was at the mercy of the people and circumstances around me. And I was seriously worried that I’d never be me again – I didn’t know how to get the strong, independent, positive woman back.

“Time heals what reason cannot.” – Anonymous

I know it was not a very long time (although it felt like years) but somehow, I’ve snapped back. I feel like me again. I don’t know if it was time, telling my story (see below), the tattoo (also below), the Red Sox going to the World Series (woo hoo!!!) or what, but somehow this morning I woke up for the first time like “I’ve got this.” I can take my life back. And I’m going to.

“When writing the story of your life, don’t let anyone else hold the pen.” -Harley Davidson

I love that quote! It’s so true. Take control. Be you. Don’t let anyone else dictate your happiness, make you feel like you’re not good enough or think that there is anything you can’t do. (And don’t ever try to ‘fix’ someone else’s life – especially if they don’t want to be helped.) I used to know (and live by) that, and now I’m going to again. To be honest, I’m a little ticked off that this happened during the month of pink, when there were so many events with such great people, but then again, maybe it was keeping busy and doing all the events and seeing everyone that helped me snap back so quickly?

This has been a whirlwind of a Breast Cancer month:

  • Started at the end of September with the Komen walk, followed by the incredible Runway for Recovery event, and then the American Cancer Society’s Making Strides for Breast Cancer walk – all of which I already blogged about.
  • Last weekend the fun continued in Providence at the Gloria Gemma Flames of Hope run/walk. Alicia pulled together a team, including her fellow Rhode Island Charity pageant queens, their families and my friend Abby. In addition to all of us walking in the 5k, Alicia even ran the Pink Pump Palooza 50 yard dash in heels!
  • Friday mom joined me for Dana-Farber’s Breast Cancer in Young Women Forum. Because of how I’ve been feeling, I couldn’t even focus or make myself really think through what I was going to say until that morning. I’ve been in such a fog, I really didn’t want to do anything except what I had to. Luckily, I knew I had to do this, so that morning, mom and I left early, went to Dunkin Donuts and thought for a few minutes over tea. Then I told her, “Ok, I’ve got it. The most important thing is to have 1-3 main points. Here’s mine: You’ll hear lots of stories today – that’s the best part of days like today. But the most important thing to remember is it’s all about you. Everyone is different. Some things work for one person, but not another. You are unique: do what’s right for you.” And then, thinking through my story and all that happened since March 2012, I came to my second point: “It doesn’t matter if you’re married, single, have children or live alone – surround yourself with people who love you, who make you happy. That’s what got me through – all the incredibly loving and supportive people I’m so lucky to have in my life. And let them help you – it will help them through it, too.” (See, Tina, I do listen sometimes…) And the talk – and the day – went well… and I started to feel a little more like me…

photo (24)

  • Friday night, while not breast cancer-related, I went to Salem with friends from our running team, to experience some of the haunted happenings. I know that just spending time with these friends who inspire me with their marathon runs and overall kindness and determination in life helped me feel more like me again…

halloween

  • And finally, Saturday night was one of my favorite nights of the year: the Nashua Harley-Davidson Fashion Show and Live Auction Making Strides Against Breast Cancer Benefit. As you’ll see in the pictures below, Nick, Alicia, Vic and I all had a blast! Robin Dixon, of Nashua Harley-Davidson, is such an amazing supporter of the American Cancer Society and makes the event even bigger and better each year! In addition to winning things in the raffle and auction (and losing a few things like my TV, darn it!), we had fun with people asking to wear Alicia’s crown, the great food and… my first tattoo! Not only did I do one, but Nick also got a pink ribbon – his with wings…

So I’m not sure what actually did it, but somehow, thank God, I am me again. I love my life, am so blessed by all the fabulous people in it, and I will not let myself get lost so easily ever again.

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I am frustrated. (Hmmm… I don’t think this is the first time I’ve started a blog entry with those words!) Ever since March 2012 when I was diagnosed with breast cancer and my dear friend Heather said “We are doing the Jimmy Fund Marathon Walk in your honor!” I’ve wanted to walk the full 26.2 miles. Last year I was still going through chemo, and hadn’t even begun radiation, so was only able to do the last five miles with the team. I said this was going to be my year!

Now it’s looking like it’s not. No worries, it’s not severe health related or anything truly bad like that, it’s just about listening and being smart. You see (maybe you should sit down, this is such a shock coming from me), I have a lot planned on September 8.

  • First there is the Jimmy Fund Boston Marathon Walk. I intended to walk the full 26.2 miles, beginning at 6:30 in the morning and guesstimating being done about 2 p.m.
  • Then it’s my cousin Rick’s wedding late that afternoon in Wrentham…
  • And as if that isn’t enough for one day, I need to then get to Logan for a 10:30 p.m. flight to Paris. (Yes, Paris – for work.)

At first it was like “great – you’ll be so tired, you’ll conk right out and sleep the whole plane ride!” Ah, but I can’t! We can’t forget the delightful lymphedema in my right arm! I was told that I will need to be up exercising it and walking around every hour of the flight – oh, because of the fear of blood clots, too, because of the tamoxifen. And this is also if my arm isn’t already swollen from the intense walk…

So my close friends and family have all chimed in. And there has not been one person who is in favor of my doing the whole 26.2. In fact, some have quite vehemently told me I will NOT be doing the full walk. (Note: when told I absolutely cannot do something, that usually makes me want to do it even more.) Arrrggghhhhh!!! Why does it all have to be on the same day???

But none of those dates and times are in my control. What is in my control is my body. And how much I put it through that day (and every other). Sometimes I forget I’m not superwoman. That I have limitations. (I know, this blog is full of shockers tonight, huh?) I honestly don’t want to be in pain or have an abnormally huge right arm for my Paris trip. I want to actually be in the work meetings I will be there for, not in a Paris hospital, simply because I was stubborn and insisted on doing it all.

So that’s that. I will only walk the half marathon: 13.1 miles. I’m trying to get over the feeling of letting people down by not walking the whole thing. I feel like I’m letting everyone down (not really sure who everyone is, but just everyone). The Jimmy Fund. Dana-Farber. Everyone who is donating to my walk. Myself. I know in my head that it’s not true; no one else feels that I’m letting them down. I will keep reminding myself that. And I will remember that, thanks to Dana-Farber and all the awesome doctors, researchers, nurses and everyone there, I am here and able to walk and raise money to help kick cancer!

And thank you to everyone who has sponsored me and my team – Team Inspire Boston – so far. I’m one-third of the way to my personal goal, and a quarter of the way to our team goal, all thanks to YOU! If you haven’t yet donated, please visit my personal donation page – even a few dollars – every cent counts and helps us conquer this horrid disease! Or even better: join us for the walk! Any distance is welcome! Go to Team Inspire Boston to sign up and enter code JF2013 for $5 off the registration fee. We’d so love to have you cross the finish line with us!

Oh, and speaking of Dana-Farber and the Jimmy Fund – it’s the annual telethon, which Nick and I were part of this year… and I guess in a way this year, too. I just saw this pop up in my Facebook Newsfeed from The Jimmy Fund:

jimmyfundtelethonCrazy to think that I looked like that one year ago. Boy, am I happy to have hair again! But if (literally) baring my head helped inspire someone to donate and help #KCancer, it was worth it!!!

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Yesterday was a beautiful day – the perfect day to run home from work. Nick dropped me off in the morning and I was looking forward to it all day. I was psyched when I was lacing up my sneakers and heading out the door. I even planned how I could make the two mile route longer by running past the BU Bridge and over the Mass Ave. Bridge instead, then back to my place.

Things always happen in threes, right? The first not so great thing that happened was I realized I forgot my headphones. Ugh! I hate running without music! Oh well, I decided that since I run with my phone in my hand, I could just have the music on low and it shouldn’t bother anyone. I ran across the Western Ave. Bridge and down Memorial Drive.

It was a nice run, I was feeling good – and then (number 2) there was the huge flash of lightning and crash of thunder. Oh crap, I thought, I better run a bit faster, since there’s really no shelter, and I’d rather not get struck by lightning…

So I picked up my pace, praying the storm would hold off, when – yup, here’s number three – I tripped on the sidewalk and (in seemingly slow motion) I went flying across the sidewalk. It was very similar to the Christmas Tree Shoppe fall just over a year ago, only this time my knee was spared and it was my iPhone and right elbow that bore the brunt of it.

Thank goodness I was wearing my compression sleeve and glove. It really saved my right arm quite a bit. Of course, now the $200 sleeve is all ripped up and bloody, but I can only imagine how bad my arm would be had I not been wearing it! (And luckily I do have two others.) (Sleeves – not arms.)

This fall should have been no big deal. But when you’re living with lymphedema, the number one thing they tell you is “Avoid trauma/injury” – I’m not even supposed to have manicures (but I do). So really, having a big gash in my right elbow is not a good thing. Not only do I need to take extra good care of it so that it doesn’t get infected, I need to really watch for swelling, too.

I really thought that when chemo and radiation were over, I could go back to regular life. I hate that life will never be normal again. That there’s always something to worry about. That I should wear my sleeve every day (but I don’t). That I need to do my exercises and massage every day (I do try). That I need to constantly monitor every scrape on my upper right side. It’s just so frustrating!!!

But I am thankful. That I am no longer in chemo (and have hair again). That there are ways I can control the lymphedema. That I don’t have cancer any more. So while I wish falling while running was no big deal, I am thankful that I can run at all.

 

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So the disappointing news about the surgery wasn’t the worst thing that happened last week. In fact, my conversation on Friday with my physical therapist put the one with my reconstructive surgeon to shame.  It’s taken me until now to digest it all – in fact, I don’t think it’s really sunk in yet, but I decided I need to write about it to get it out of my system and start the new week fresh.Long story short: she told me that I am supposed to wear the damn sleeve and glove every day for the rest of my life. Yes. Every. Single. Day. Forever. You can imagine my response. In my head: F@$% that! In reality: “You’ve got to be kidding me?!” Her response? “No, I am completely serious. You’ve see what happens when you don’t wear it – the swelling comes back. You need to wear it to keep the lymphedema under control.”

The miserable glove and sleeve

The miserable glove and sleeve

She went on to inform me that while she “didn’t want to scare me” if it got worse, she and I would become best friends because we’d need to go to wrapping in which case I would have to go there every day for about two weeks, 7-8 hours a day to have my arm wrapped the entire time. You’ve got to be kidding me. Frankly, this is all way worse in my mind than cutting my chest off.

So every day, must do the massage, and the exercises, and wear the sleeve and glove. Ugh. I honestly can’t comprehend this right now. Just when I think I get to go back to being somewhat normal. I just want to scream.

I came home rip-roaring mad (it didn’t hurt that a family member had called and given me other disappointing/frustrating news), and told Nick all about it, ending with, “They expect me to wear it every day for ever – I don’t think so!!!” (Maybe there were a few bad words mixed in there too…) And once again, Nick just looked at me and said, “Mom, don’t be stupid. If it’s going to help you, you do it.” Ugh. When did he become the parent?

I know logically that he is right. But I don’t want to. I hate the sleeve and glove. They’re grungy even though (or because) I wash them. It’s summer and they’re hot. Mom is going to try making some lightweight, fashionable sleeves to go over the medical sleeves (which are really expensive or I’d get all different ones like those from Lymphedivas). And they make it obvious something is wrong with me. People are always asking me now what the sleeve and glove are for, and because explaining what lymphedema is can be confusing, I just say “cancer related – my arm swells.” And it used to be when they would ask how long I have to wear it for I would say “just a little longer.” Not any more…

So I need more time to let this sink in. I’m not going to say I’ll wear them every day forever, but I won’t rule out wearing it the majority of the time. We’ll see. I have a lot of research to do…

 

 

 

 

 

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It worked. My determination to look forward and focus on the future really did help to pull me out of my funk and get me back on track. But what I also realized was that I couldn’t keep (and I can hear certain people snorting at this even before the words hit the screen) burying myself in work and denying anything is different. So I decided to finally – one year later – face cancer.

Just after my last blog entry called Facing Forward, I was on Dana-Farber’s website and found that a new session was starting called – ironically – Facing Forward After Breast Cancer Treatment. As you’ve probably figured out, while I love talking to people about their problems and helping them figure everything out, I’m not the biggest fan about talking to others about my feelings, especially if it could bring tears. But I realized that if I’m ever really going to move forward, this could really help. So I went.

It was the first time I’ve ever been in a room where the vast majority of women had hair practically the same inch or so length as mine – made me smile! As did hearing why these sessions were created: “Life as you know it is changed. You’re vulnerable. You’ve lost some control. You have a sense of time being limited.” Yup, yup, yup, yup. “During treatment you’re busy, focused on fighting.  Then it all stops. The transition can be very difficult. People assume since you’re done with treatment you should be ready to move on. And you feel guilty for not being there yet.” Exactly. Clearly I was in the right place.

It was explained to us that this is a “psycho education group.” So not a straight support group exactly, but a combo with expert speakers, the first being a medical oncologist. You would think after all the time I’ve spent with doctors during the last year that I would know it all – but I learned several new things – and felt good that I was able to answer some questions for others and help them, too. Some of what surprised me, I think I have heard before but probably just didn’t want to believe – or hoped that I’d be the exception. Not seeming so… As many of you know, I’ve been frustrated because I’m not back to where I was running-wise. Well, one thing I learned was that fatigue typically lasts about two years after treatment. Two years!!! So I guess my slow three miles (more walking than running), three months our of treatment, is better than nothing. You know what else can last two years? The neuropathy – the numb tingling feeling in my fingers and feet. I’m so sick of that – but guess it may be around a while longer…

But I’m here. And I’m basically healthy. And I have the best friends and family in the world. And I love my job. So I’m happy. And thankful. And I’m on the right track.

So I didn’t stop there. On Saturday, I took another step: I went to the Young Adult Cancer Conference at Dana-Farber. And I was really glad I did. More than the sessions, it was meeting other people around my age who have faced (or are facing) cancer, that made it such a worthwhile day. Everyone has a story, and they are all so compelling, no matter how straight forward they are. Kicking off the day was Mike Lang, a cancer survivor who, with his wife Bonnie, has completely transformed his life to help others facing cancer by taking them on adventures through Survive and Thrive Expeditions, as well as helping them tell their stories through movies, like Wrong Way to Hope. He shared his amazing story and clips from his latest venture: Valleys, which you can watch on Huff Post – Generation Why. Try to watch any of his work without shedding a tear – I dare you! It is so raw and true – we can all relate. What I really love is his motto: Reflect. Refocus. Rebuild. Live. Yup – that is exactly what I am doing!

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For about two weeks life was almost normal – no treatments (just visits to the hospital), work five days a week, some of the chemo side effects fading and my hair (slowly) growing back. I felt myself slipping back into the good old denial and fooling myself that cancer doesn’t exist in my life. But starting tomorrow, it’s a new reality: radiation.

Just like with the chemo, it’s been a bit of a crash course in radiation. I admit I haven’t exactly been paying as much attention as perhaps I should have (part of the denial thing), but now I’m cramming. The folks in Radiation Oncology at Dana-Farber are – like everyone I’ve encountered at Dana-Farber and Brigham and Women’s – great. They talk and walk you through it all so even those of us who aren’t too medically inclined have a clue what’s happening. I had the mapping session where they figured out the treatment field (on me) and gave me six tiny tattoos to help them correctly position me at each appointment. Then on Friday I had the dry run, where they took x-rays to make sure they got the mapping right, and walked me through what will happen for each of my next 25 visits.

Radiation Therapy (From the Breast Radiation Guidelines sheet from Dana-Farber): Radiation therapy is a painless treatment, similar to an x-ray. It uses high-energy x-rays to damage the DNA of cancer cells so that they are unable to repair themselves. Radiation also affects normal, healthy cells. Unlike cancer cells, normal cells are able to recover from radiation damage.

So starting tomorrow, Monday-Friday for 25 days (except Christmas and New Year’s Day) I’ll end my work day by running over to Dana-Farber for radiation. Several friends have given me tips on getting through it, and I am hoping to sail through. Then reinflation, a few months of rest, surgery for the implants, nipples, more tattooing, and then…

Tamoxifen. You may have heard the news last week: the results of a big study were just revealed and it determined that 10 years of tamoxifen is better for life expectancy than five years. Of course. That’s just my luck – just when I thought it couldn’t get any worse! So frustrating…

But at the check-up with my oncologist Friday (well, substitute oncologist, as mine just had a baby – her first, yay!), she said that I shouldn’t worry too much about it right now. A lot happens in the medical field in five years, and by the time my five are up, who knows what the recommendation will be. With my luck it will be to take it forever, but whatever. We’ll see.

There is some good news. I get to have the port taken out of my arm soon, which will be wonderful. And the best news of all: I ran today. Well, that was preceded by some not great news. I asked the oncologist when the numbness and tingling in my feet, legs and fingers will stop and she said it could be six months, a year or even never (although that’s rare). I had been waiting for my feet at least to be normal before getting back to running, since I’m such a klutz anyway. But there’s no way I’m waiting that long – I can’t stand being this out of shape, and want my clothes to fit right again. So this morning I went for my first run in practically forever.

I actually cried (happy tears of course) as I walked into the cool air in my running gear. It felt so good to get back out there! Of course, that only lasted a short time. It was like I’ve never run before. I was only doing 1:1 intervals and I was hurting by the time I hit a mile. I only did one more because I had a pain in my side and felt like I was going to throw up. (So pathetic how out of shape I am…) But I was proud I didn’t fall and two miles is better than none. It’s a start.

And tomorrow – uh, today, as I just realized it’s after midnight – is another start. Radiation. And it will be fine. I got through chemo just fine and I can get through this.

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Why does it constantly surprise me that I am fighting cancer? Why does it take getting sick to slow me down? Why do I insist on trying to be normal and keep up with everyone else and pretend nothing is wrong? Why can’t I remember that I am bald? Yes, those are all rhetorical questions – I don’t expect anyone to answer them. I just get mad at myself and mad at the whole situation. I am mad.

When I returned to work Thursday following the port, I was asked “does it hurt?” Yes, I replied, but it’s not much different from every day – something always hurts. I’m used to something constantly hurting, whether it’s my arm, my boobs, my fingernails, my feet, my mouth, whatever – at least they usually take turns and don’t all hurt at once. I ignore it and plow through.

But yesterday I started feeling… different. It was really strange how it washed over me and suddenly I was concerned. I’ve been congested and blowing my slightly bloody nose day and night that I’ve gotten used to the constant sight of blood (sorry for those that this grosses out – but it’s reality). When I mentioned it a couple of weeks ago, my doctor told me not to worry about it, but I wondered if it was at all connected to how I am now feeling. Each time I take a deep breath, my chest, back and back of my neck get really tight, and my head feels… full, I guess, too. And if I bend down, my head feels like it might explode. Add that to how tired I am and how just walking to my car makes me winded, I figured something could be wrong.

So I spent much of today back at Dana-Farber. Blood clot? Pneumonia? An EKG, CT Scan and a bunch of blood work later and the prognosis is basically that I have a viral infection and that the build up of the taxol is catching up to me, and that I need to slow down. Basically, a reality slap of I’m not invincible. That I am being poisoned each week and it is a cumulative drug and it’s going to keep getting worse for four more weeks and I better slow down or I’ll only make it worse. I better wake up and realize that I can’t just ignore the fact that I am fighting cancer.

So I canceled all my weekend plans. Rest and Robituson. Those are the doctor’s orders. And even though I’m mad at the whole situation (being sick, cancer in general, and missing dinner with a friend tonight, my eldest Goddaughter’s birthday party tomorrow, book club Sat night, etc. ), I will follow them. Both because I feel horrible and don’t want to move from my couch anyway, but also because I am not ready to sacrifice work or the CMAs and I want to be ready for both next week. So I will sleep the weekend away and hopefully build up enough energy to pick the pace back up again on Monday…

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