Feeds:
Posts
Comments

Posts Tagged ‘denial’

“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.

Read Full Post »

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.

 

Read Full Post »

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…

 

 

 

 

 

Read Full Post »

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!

Read Full Post »

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…

Read Full Post »

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.

Read Full Post »

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! 😉

Read Full Post »

Older Posts »