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Dreams Do Come True

Posted in Boston, Cancer, chemotherapy, connections, Dreams, family, Fundraising, prayer, recovery, tagged , , , , , , , , , , , on November 16, 2012| 4 Comments »

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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Week 10 and Distraction in Nashville

Posted in Boston, Cancer, chemotherapy, Decisions, family, Road trip, tagged , , , , , , , , , , , , , , on November 7, 2012| Leave a Comment »

Today was week 10 of Taxol. And it went very smoothly. Only two infusions: pepcid and Taxol, since I did well last week without any Benedryl or steroids. It makes it a quicker visit and I’m able to stay completely alert for the infusion. The port is working out well, although I was hoping it could come out right after the last infusion but it’s recommended I keep it in until after surgery in January. At least it’s not as tender any more so I can handle it bumping up against my boobs of steel until then…

There was another recommendation today, too: talk to the radiation team. I had decided not to do radiation for a number of reasons, but I never did meet with them after surgery. They never called and I didn’t call them. I know that’s pretty weak, and now that my doctor has pushed it, I will call and listen. It doesn’t mean I will definitely do it – I really, really don’t want to – but I will consider it. So while there are only two weeks to go with the Taxol, it may not be the end of treatment.

Nashville was a fabulous distraction. Tina has made it her mission to keep me distracted throughout this entire process and she certainly pulled off the ultimate distraction by winning this fabulous trip! We had such a good time, with so much packed into just a few days. It really was a once in a lifetime experience, thanks to Tina sharing our story, Give the Gift of Music and the Country Music Association.

Music has always been healing for me. Certain songs are like therapy. And for a country music fan, being back in Music City brought a rush of emotions. In part it felt kind of like I was back on the road trip, and brought me back to where I was in my life two years ago, thinking about the road I’ve taken (literally and figuratively) and how much things have changed, for better or worse. If I’d chosen to settle in xxxx, how would this story have gone? One thing I know for sure, I am so thankful I’m in Boston, for the incredible support network of friends and family, to be working at Genzyme and because of Dana-Farber. I know that some of the other parts of the country I considered moving to do not have anything that (at least in my mind) compares to the support and the care I am so lucky to have here.

Tina was a great balance of watching over me (reminding me to wear a mask on the plane so I didn’t get sick and going with a slower pace, including daily naps) and finding us fun things to do.  I was excited to go to a few places I didn’t get to see on my road trip, like the Loveless Cafe, The Country Music Hall of Fame and the inside of The Ryman. And then there were the shows…

The CMAs were simply awesome. We had great seats and you could feel the excitement vibrating throughout the arena. From the moment the lights dimmed and the live show began, it was more like a concert with a few awards sprinkled in than a typical awards show. We couldn’t have asked for a better show to see in person!

We returned to the arena two nights later to see another show: the taping of the CMA Country Christmas show, which will air on TV in late December. Many of the same artists performed, with a few new ones sprinkled in like John Legend and Colbie Caillett. What was really interesting was because this isn’t live, there was a ton of stop and starts, and some retakes, even of songs. So what will be a one hour show took about three hours to tape. We enjoyed every second!

And while this was a great distraction, there was no completely getting away from things. Nearly every place we went, someone would ask me if I was still in treatment or what it is that I have. You guessed it – I went bald (well, I have a bit of baby hair now, but basically bald) the whole time, so was a little hard to miss. Had I worn a wig, I highly doubt I would’ve had any of those interactions. And I would have missed out on talking to so many kind, caring people who have had cancer or a close loved one with it. Honestly, making those connections are the best part of this nightmare experience.

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Rest and Robituson

Posted in Boston, Cancer, chemotherapy, Denial, recovery, work, tagged , , , , , , , , , on October 26, 2012| 4 Comments »

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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