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Archive for November, 2012

Done – but Not Really…

Posted in Cancer, chemotherapy, Decisions, hair, Planning, radiation, recovery, tagged , , , , , , , , , , , , , , , on November 21, 2012| 4 Comments »

“Doesn’t your body know you’re done? Can’t it just be back to normal?” Tara and I mulled over how wonderful this would be as I laid on the couch following my nap. To just snap my fingers and be normal me again. Week 24 of chemo, week 12 of Taxol: done. Only it’s not the end I hoped for.

I know everyone wants me to be excited and to celebrate but I honestly don’t feel it at all. (Although I loved the congratulations card Tina gave me from my Goddaughters, including the Thanksgiving picture eight-year-old Nadia drew me that said “p.s. One thing I am thankful for is that you don’t have Taxol!”)

My body aches more than ever, the tingling and numbness in my feet and fingers has steadily increased and now I have phlebitis in my right arm. So in addition to starting radiation, I am heading back to physical therapy, too. Doesn’t seem like an end to me. I really wish I could be happy, but I’m not.

I did, though, appreciate how the nurse practitioner put it to me today. She said, “It’s just like you’re in a triathlon. You’ve made it through two huge parts: the surgery and the chemo. Now for the third part: radiation.” I liked the sound of that, but also can’t help thinking that it’s even more than that – then there is the implant surgery, which now won’t be until summer, then the two follow-up procedures to that, which brings us near the end of 2013. Then the five years of tamoxifen. As I said last time, it’s the never-ending saga. I need to just suck it up, accept it and stop whining about it – I’m getting sick of myself! And I will, I just have to get back on my feet and then I will start to feel better.

I think I just keep feeling like every time I take two steps forward, it’s followed by one step back. Like the pain that’s been growing in my arm the last couple weeks today turns out to be phlebitis and so I now need to add PT back into my regimen. At least it’s coinciding with being able to take ibuprofen again, now that the chemo is over! And then I was excited because I signed up for the Jingle Bell Run in mid-December thinking ‘Of course I can be running again a month after chemo!’ I didn’t realize how bad my feet and legs would get – and today the nurse said it probably won’t go away for a month, maybe more. So yet another race I paid for but won’t be able to run. (Note to self: no more signing up for races until I am actually fully back to running!!!)

I know I need to give my body time to rest and heal. I just get so impatient with it and simply want to be normal again. And look half as good as Giuliana Rancic.

Giuliana and Bill were on Katie today, as I was dozing on the couch. My ears perked up as I heard them start to talk about her breast cancer. I knew she had, like me, a double mastectomy. But, even though they said she had an aggressive form of breast cancer, instead of chemo and radiation she opted to go straight to the five years of tamoxifen. I don’t get it: why and how??? That certainly wasn’t presented to me, I thought as I looked at her beaming at me from the TV, looking so beautiful with her long dark hair. (Yes, that is jealousy you sense.) I just don’t get it – how can you go through that major surgery and not do the other things to lessen your chance of recurrence? I know it’s a personal choice, but I guess I never felt like there was really much of a ‘choice’ at all.

Jealousy will get you nowhere – and it’s not like I lost my hair so Giuliana could keep hers. And hey, my hair is starting to grow back – it almost covers my head, so soon I won’t look like a middle-age balding man anymore. The aches, pains, numbness and tingling will go away. I will be able to run again. I will lose all the weight I gained. Yes, radiation will have its own challenges, but they will be less than the chemo. If I made it through 24 weeks of that, I can make it through 25 sessions of this. And then I’ll be that much closer to the finish line… and maybe then I’ll feel like celebrating.

Update, 9 a.m., Nov. 21: It’s amazing what a good night’s sleep can do! I woke up with a new perspective and felt the need to update this post. As I just posted on Facebook, “Today I am thankful for mornings where you wake up with a new perspective! I feel better – more energized, determined and like my old self. Crappy cancer can’t change me!”

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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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The Never-ending Saga

Posted in Cancer, chemotherapy, Decisions, Discovery, family, lymphedema, Planning, radiation, recovery, tagged , , , , , , , , , , , , , , on November 14, 2012| 4 Comments »

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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