Posts Tagged ‘discovery’

So as I wrote these I thought how cliché and dippy some of them are. I erased them all and started over multiple times. But they kept reappearing on the screen. Because even if they are dippy and cliché, they are true. They are the things that I’ve finally learned and come to know as true, and they help me every day in my quest for a happy life…

21. Do what makes you happy. Not because someone told you to. Not because it will make you money. Just do something because you love it. If you’re passionate about something, everything else will follow.

22. Happiness is contagious. It’s hard not to smile back. Make someone else smile today. It’ll make you happy. It’s a fabulous circle!

23. You know what else can make you happy? Running. I never would’ve believed it, but once I tried it, I found it’s true. That whole endorphin thing, I guess. I actually always think I hate running when I start out, but once I get going my mood totally improves, and after I always feel better than when I started.

24. Music. Another thing that can totally change your mood. (And why is it that you can always remember the words to songs, even (especially) the ones you can’t stand???)

25. Travel. Explore. Discover. Whether it’s by the Mediterranean Sea, the streets of San Francisco or the mountains of New Hampshire, you’ll find new aspects of you along the way.

26. Be yourself. Don’t try to be anyone else. You’ll never succeed and it’s not worth your time or energy. Love yourself as you are. But…

27. Know that if you are not happy with yourself, you are the one person who can change things. You have control over you. Don’t waste your time being miserable.

28. And don’t waste your time with people who don’t treat you the way you deserve to be treated. If they make you cry more than smile, it’s a clue that you should get out. (It took me way too long to realize that one. Please trust me on this one and if that sounds like your relationship, get out now!)

29. In fact, don’t waste any time. Your time. Other people’s time. Nothing is more precious.

30. Guilt is a wasted emotion. If you feel guilty, do something about it. Change it. Or get over it.

31. Your parents probably do know best. And they will always worry about you, know matter how old you are. And when you become a parent, the worry will never end. It just comes with the job.

32.  Every day is another chance to start something new. Or start over. It can be whatever you want it to be.

33. Don’t let anyone else put you down, discourage you or tell you that you can’t do or be something. Usually they are the ones with the issue.

34. Encourage others. Boost them up. Help them find their way and thrive. It takes nothing away from you – you both win.

35. Spend time talking with your elders. Learn their stories. They are your stories, too, and they’ll be lost if you don’t listen… and spend time with the younger people in your lives, too. They can benefit from your experiences, and you can learn a lot from them, too – like how to relax and play! (Something I’m always trying to learn – the relax part…)

36. Learn the art of compromise. I’m trying. It’s something I’m still learning, but what I do know is that you can’t have everything your way all the time. And that’s ok.

37. Everything happens for a reason. We may not always understand it, but the reason usually becomes clear later on. (I’ve often thought that maybe the reason I got cancer was to help raise awareness and save others. So do your self checks people!!!)

38. Say thank you. Be grateful. Appreciate everyone who is there for you, helps you, loves you. Thank you are two words you can never say too much.

39. Pray. No matter where you are, what time it is or what’s happening around you, you can pray. It’s one thing that always helps make me feel better. And the other…

40. Deep breaths. Breathe. Just breathe.

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Those of you who have been following this blog for a while will remember many mentions of Mirany, my dear friends Sarah and Scott’s sweet little girl who was diagnosed with neuroblastoma last winter when she wasn’t even a year old. I will never forget the moment I found out – where I was, what time it was, how I felt – everything froze in horror, fear, disbelief and sadness. Then, after months of treatment, Mirany had surgery and was released from the hospital on the same day I was diagnosed in March. Since then, it has been eight long months of ups and downs for both of us.
Today we received the most wonderful news. Since so many of you ask me how she is doing, here’s the note Sarah, Scott, Mirany, and TommyBoy (their dog) sent:
“Dear Friends and Family,
Today Mirany’s oncologist shared incredible news with us: For the first time in her life, she is cancer free. Both her MIBG scan and urine analysis were 100% negative for neuroblastoma, and her MRI reveals only scar tissue. In addition, the nodule in her lung that caused much anxiety and distress is gone.
It is, in some ways, as difficult to believe this wonderful news as it was to accept the initial diagnosis. It seems impossible that this ordeal could be over. As painful as this journey was, we were always aware of the blessings we received upon the way, and our hearts ached (and will ache) for all those still fighting. The past 335 days have been a lesson in humanity and compassion; we can only hope to “pay it forward” and be as good to others as you all have been to us. Let’s keep looking out for each other.
With love,
Sarah, Scott, Mirany, and TommyBoy”
I have learned so much from all of them this year. About love, strength, perseverance, sacrifice, friendship, faith – so much. Even about cancer, doctors, hospitals and coping. And innocence: Mirany is simply precious and innocent. I am so thankful she will not remember this battle she’s just fought, and will now be able to simply be the normal little girl she deserves to be.
Dreams do come true – thanks to fabulous doctors like those at Dana-Farber and Brigham and Women’s, researchers, The Jimmy Fund and most of all, the prayers, love and positive vibes from all around us… I can’t help but think of how holiday season is approaching and we’re all going to go out and spend oodles of money on things no one really needs and, in some cases, don’t even want. Consider the charities this Christmas: buy your holiday cards, make a donation or even name a gene, all through Dana-Farber‘s web site. How much easier could shopping get – and you could help make many dreams come true…

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I can be very stubborn. (I can hear the laughs and see the nods of agreement!) But I will listen, particularly when someone is using terms like “survival rate,” and it’s hard to argue with statistics.

Mom and I both went into this morning’s meeting with the radiation oncologists at Dana-Farber inclined to “just say no.” I was fairly sure I knew what the rates they’d quote would be, based on our initial discussion many months ago. What I didn’t realize was how much things changed when my specific details were factored in post-surgery. Everything from (you guessed it) my “young” age and the size of my tumor to the fact that it had spread to my lymph nodes and there was lymphovascular invasion (LVI) influence the recommended treatment.

So what convinced me? The numbers. The fact that right now my chance of recurrence is approximately 15% and by doing the radiation it brings down the chance of recurrence to 5-7% . That’s a lot more than the 3% improvement I was expecting. I can say no to a 3% improvement – but 7-10%? Even as much as I want this all to just be done, I can’t ignore that.

Tuesday is my last chemo session. But it’s not the end I wanted. It’s like the end of the last chemo session – it’s just the conclusion of another chapter in this never-ending saga. In the next week I will have to go to Dr. H and have him partially deflate my left tissue expander so it won’t get in the way of the radiation. Then the Thursday after Thanksgiving I’ll go in for the radiation planning session where they’ll tattoo marks on me to make sure they radiate the right area each day.

Yes, each day. Monday through Friday for five weeks – 25 sessions. Luckily they will only be a few minutes each time, so I will be able to continue to work through it. The biggest side effects are continued fatigue, redness and soreness. And, since my lymph nodes were removed, the increased risk that the radiation could trigger lymphedema. (I will be praying about that one – really don’t want that!)

And the biggest bummer of it all for me? Postponing the surgery I was supposed to have on January 2. I thought I’d start 2013 with surgery and pretty much be done, but now I’ll be doing radiation and have to wait six more months to switch out the tissue expanders for implants. Then a few months after that will be the nipple surgery and then a few months after that will be the tattooing. Oh – and then the five years of tamoxifen. It really is the never-ending saga…

But it’s worth it. To do everything I can to be cancer free. To fight every step of the way. To not have to look back and wonder, “if only I…” because I have, in fact, done everything within my power to get rid of it and prevent it from coming back. So I can continue to wake up each morning, breathe in and breathe out, and thank God for another day.

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Phil was right – you can do anything once. So I did get through the last round, at least so far. I am not feeling great, but not horrid either, and for that I am very thankful! After feeling similar last time and then crashing later, I am taking it easy and being cautious.

I did smile for real once the chemo party got started, as you can see in the pics. Not only did we celebrate the last of the worst chemo cocktail, we celebrated Vanessa’s birthday with a yummy cake made by Tara. And while he’s not in the pictures because he had to leave a bit early, Nick was with us for the first part of our celebration, too – I couldn’t ask for a more loving, supportive son. I am very lucky.

And yes, also as you can see from the pictures, I tried embracing the blonde a bit to see if I could get used to it. Not exactly my favorite, but I will be happy with my real hair no matter how it grows in! Just to have my own again will be so nice! I got encouraging news, both from my oncologist, who said hair grows in rounds, so some parts will grow at certain times, and then other parts at other times, and then from a fellow cancer survivor who said that her hair began growing in between rounds 3 and 4 of A/C and through Taxol, and is now up to 2″ – so maybe I will stop having Nick shave my head and see what happens… maybe I will have some hair before the end of the year!

I also got my new schedule: I have three weeks off and will start Taxol once a week for 12 weeks on Tuesday, September 4. Then I will be able to work every Monday, have treatment Tuesday, and hopefully be able to work Wed – Fri each week – at least Thurs and Fri – but we’ll see how it goes… Then I should have my last one Nov. 20 and will truly have so much to be thankful for this Thanksgiving!!!

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It’s happening and it sucks. I woke up this morning and when I finally fully opened my eyes in front of the bathroom mirror I saw that strands of my short brown hair covered the white t-shirt I slept in. Then I got in the shower and it was just like after you get a haircut and you have to wash off the little hairs. Only a zillion times worse ’cause it wouldn’t stop. Every time I touched my head my hand would be covered in hair. I finally gave up, turned off the shower and cleaned the very clogged drain. Who would’ve thought short hairs could make such a big pile?

So I had to pick out clothes that hopefully will camouflage hairs that fall out on them while at work today, and tonight I will shave my head- or I should say, have my head shaved. I don’t want to, but once again I’m forced to choose the better of two evils. Keep fighting the inevitable and have to handle the annoyance and embarrassment of my hair steadily falling out or just rip the band aid off quickly. Better to get it over with and start wearing hats and wigs… ugh.

p.s. sorry to those who tried to read this earlier – I posted it via my phone on the way to work and must have that default to password protected…

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Saturday, May 11, 2012

I looked. I looked because I was actually scared not to. I have been having wicked insomnia lately. Even if I don’t take a nap in the afternoon, or have caffeine after 7 p.m., and even limit myself to one diet coke in a day and only decaf tea and go to bed by 10 p.m. AND take my pain meds, I’m lucky if I can get a wink of sleep by 3 a.m. I’m usually exhausted and can’t actually DO anything except lay there, but my mind will not turn off, no matter what I do. And when I finally do nod off, I have some crazy, often disturbing dreams.

Last night it was that the wounds on my chest began to open and come apart. They are glued together – there are no stitches. Crazy, huh? It all hurts so bad, my entire chest, that I’m not sure I would know the difference if they were starting to come apart unless I look. And my mom, the only person I’d ask to check for me besides the doctor, had to go to work, so she’s no longer with us at my apartment any more. So it was up to me.

I did it a bit sneakily at first. I went in the bathroom, distracted myself for a few minutes like the last time, and then stood in front of the mirror. Slowly, I pulled one side of my tank top down, just enough to see the wound (too early to really call it a scar yet and I can’t think of another word for it, although I’m sure some of my writer or medical friends will come up with plenty – probably glaringly obvious – ones).

It actually didn’t look too horrible. By doing it this way, I could fool myself into thinking that this was just a cut across my breast and that the rest of it – nipple and all – was just below, under my tank top. That side hadn’t opened so I pulled it back up and went to the other side and did the same thing. Nope, that one wasn’t open and oozing either, and appeared to be as good as could be expected, although that will be confirmed Tuesday by the doctors.

To reward myself for facing my fear, Nick drove me to Bliss Spa at the W Hotel, just across the Boston Common – somewhere I’d typically yell at Nick for driving to because it is so close – for a manicure. I’ve never been there before because it’s so much more expensive (double what I normally pay), but I went to the one in London and know that they are super sterile and careful, and ask clients every visit all about any recent surgeries, prescriptions, etc. So I knew my right hand would be safe there. You see, this is my new world: for the rest of my life I have to be super careful with my right arm, due to all my lymph nodes being removed and the risk of lymphedema, for which there is treatment but no cure. (I will go into all that more in a future entry, I am sure, but won’t bog down this one with the details.)

I had a relaxing time, and had just a few minor amendments to my mani to baby my hands and reduce the lymphedema risk, such as no hot treatments on that hand and extra careful cuticle treatment. Then I called Nick and told him not to worry, I could make it home, the short walk across the park. Sure, I can! It is on this trek that I realize:

Things that Suck

  • That it takes all my energy to walk across the Boston Common carrying just one small, near empty pocketbook, because I changed it out and emptied it before surgery, knowing I wouldn’t be able  to carry one of my normal size and weight.
  • That I cannot take my long sleeve top off and just wear my tank top on this beautiful day because I haven’t put the now minimum requirement of SPF15 on my right arm, chest and face (another lymphedema prevention requirement).
  • That I have to find a bench to stop and sit on at the end of the Common to rest before resuming the remainder of my short journey home, just down Charles Street.
  • That I can’t buy a lemonade because I am alone and know I can’t carry it AND my purse.
  • That I couldn’t do a damn thing  if someone came along and snatched said purse because I am currently so freakin’ weak. I know I wasn’t Ms. Muscles before, but I always thought I could put up a decent fight (thank you London self-defense classes) should anyone try anything. Now I can barely lift the stupid light pocketbook!

But I also remind myself how lucky I am. That this pain will eventually subside. That my strength will return. That I will be able to walk and run and carry heavy purses and defend myself again. There are millions of people in this world who cannot say that. I think of the people with rare diseases who my company makes treatments for, such as my dear friend Monique who has Pompe Disease. She is a fighter, who will battle the disease for the rest of her life. I read on her blog M.E.G.’s Confessional about what she goes through on a daily basis, and I know I really have nothing to complain about. She is also one of the strongest women I know, a constant source of inspiration, always sharing the positive, educating others on Pompe Disease and campaigning for treatment all over the world, including recently in New Zealand. It’s from women like her that I gain my own courage and strength, and am reminded not to take anything in life for granted!

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I feel like I’m jumping into the middle of the story, without sharing the beginning (the whole last week or so since surgery), but this is the first time I feel up to being on the computer and I feel I need to jump to the punchline: Dr. G just called and told me I’m cancer free! Ever since I woke up from surgery and was told that they had to take all of the lymph nodes in my right arm because they detected some cancer in one of them, I (and all around me) have been holding my breath, waiting to hear if it has spread and if … well, you know. But it turns out that it was only in two of the lymph nodes and so they caught it before it spread and there are clear margins around where the two lumps in my right breast were. Hence, the giant exhale!

So now everyone (including me) is asking: what does this mean for treatment? Dr. G said he is not sure, as he leaves that to my oncologists, who I will see on May 15. They may want to be extra cautious, since I’m ‘so young’ and still do wither chemo or radiation and/or tamoxofin. Oh well – better any of those than more cancer.

I am going to sign off for now – just this bit has made me tired and I need to stay awake for the fabulous celebration meal Nick and Alivia are making me. But I have to say everyone has been beyond incredible to me. Mike has been by my side practically every second, taking care of me (and thus, my mother, too) and constantly reassuring me that no matter what everything will be fine. And he’s been right so far! And mom and Mark and Nick and Alivia have joined him in alternating between keeping me sane and calm, and laughing and crazy. And Tara and Tina helped keep everyone informed, as well as kept us company in the hospital. And I can’t believe all the gorgeous flowers, cards, texts, e-mails etc. Thank you to everyone for all the prayers, love and support. I know it was all of the positive thinking and prayers that scared the damn cancer away! So I couldn’t have done it without you! xoxoxoxo (And I am sorry I haven’t really been up for talking or texting or anything – I’m so achy and the meds make me a bit loopy and tired, but I hope to be back to myself soon and also promise to fill in more of the backstory on here soon…)

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