Archive for December, 2012

When I told Tina that I was having my port removed, she said, “Oh, you’re being deported?” and we both burst into hysterical laughter. I thank God every day for my close friends and family who have kept me smiling and laughing through this miserable journey. I’m choosing to see the removal of the port today as nearing the end, at least the end of the daily part of the treatment. After January 15, other than taking tamoxifen and my PT exercises, there won’t be anything I have to do on a regular basis (unless the damned Lymphedema gets out of control, which I’m not going to let happen, or if the cancer comes back and I’m not even entertaining that thought right now). Then just a few surgeries and a few years of pills – which is nothing in comparison!

Today went well. Mom stayed over so her and Nick got up with me at the crack of dawn (actually, it may have been pre-dawn…) to take me to Dana-Farber so I could be the first person on the radiation table before moving to the OR for the port removal. Both were quick and as easy as could be. We came home and napped, and then I assured mom I was fine and she headed home. After all, I was just hanging on the couch, and am perfectly able to get up and get anything I need – I’m just not supposed to drive or do any heavy lifting.

Of course, after mom left and Nick went to work, I had a few Diet Cokes… and I realized that mom wasn’t just here to help me do things, but to prevent me from doing things! The soda made me jittery and full of energy, so up I hopped, running around the apartment cleaning this, putting that away, sorting these… and then my arm (specifically the wound where the port was taken out) started to ache. Uh oh. Now I’m remembering how they warned me not to do things so I don’t pull the stitches. Ugh. Sorry…

So to get a little more of the energy out without hurting myself more, I sat down to write this. Luckily, Tara is on her way here and we’re going to see a movie. I don’t think I can do much damage there…

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Merry Christmas, everyone. I couldn’t be more thankful for all of you, my fabulous friends and family – definitely the best present anyone could wish for. Thank you all for your love, support, prayers, good vibes, positive thoughts, etc, etc! Today I’d like to share a special story from a guest blogger, Cameron Von St. James of the Mesothelioma Cancer Alliance. Not only is it inspiring for all facing not so great diagnosis’, but is a great example of the incredible blessing of supportive family and friends…

The holiday season of 2005 was to be the best one yet. My wife and I had a three and a half month old daughter, Lily, and we were so excited to plan new traditions for our family our first year as parents. We were thrilled to celebrate our first Christmas as parents with our beautiful little girl. Heather and I talked about all the things we wanted to do with Lily for Thanksgiving and Christmas. However, all of that happiness and joy was taken from us three days before Thanksgiving, when my wife was diagnosed with mesothelioma cancer. I knew enough about this type of cancer to know that our future was not very certain anymore.

I was angry, scared and expecting the worst. I was terrified of losing my wife to cancer and being a widower with a baby. I hoped for the best, but I could not help but think that our future no longer looked as bright as it had in the days before Heather’s diagnosis. Our holiday that year was not a celebration as planned. My wife’s family flew in to visit with us during the holidays, before we had to head to Boston for Heather’s surgery. I dreaded the conversation I knew we would have, and it didn’t disappoint; it was one of the hardest moments of my life.

I spent my holidays sitting around a table listening to my wife and family members discuss our finances, our assets, and our debts. We both worked before Heather was diagnosed, but now with all the travel arrangements and medical bills, we were barely keeping our heads above water. I listened as my family discussed which of our assets we could liquidate for cash and which of our debts my in-laws could help us pay while Heather fought cancer. I was horrified and helpless. My holidays were completely ruined. It took me a very long time before I could see how mistaken I was that day.

I didn’t realize it at the time, but that was not the terrible conversation I thought it was. My pride got in the way of me realizing that this conversation was not one to highlight my shortcomings, but to show me how much love we really are blessed to have. Our family dropped everything in their own lives to help us in our time of need, were willing to make incredible sacrifices so that we could stay afloat and give Heather the care she needed. This year, I am choosing to be thankful during the holidays for such a wonderful family who is willing to help us so selflessly, and for more time with my beautiful daughter and wife to make more memories and to be a real family.

This year will be our 7th Christmas together since Heather was diagnosed, and despite the typically poor prognosis for mesothelioma, all signs indicate that we will have many more as a family. Heather has beaten the odds, and I hope that our story can be a source of hope and comfort to all those currently fighting cancer this holiday season.

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The big L – that could be so many things, I’m not even going to venture a guess as to what you’re thinking! In my world right now it stands for lymphedema. Did you guess it? It’s not exactly a roll-off-your-tongue every day word, and I personally wish I didn’t know what it meant. But when I realized last night that the phlebitis had traveled into my hand and I held my two arms together, I had the feeling this might be happening. Then at work today my right arm was considerably more swollen than my left, and was confirmed by several of my colleagues. Off to Dana-Farber I went (hey, I had to be there for radiation anyway, so why not?) and it was confirmed: yup, lucky me, I can add lymphedema to the list!

It is early, so hopefully it will be contained. Without going into a ton of detail, I need to:

  • Wear my compression sleeve and glove during waking hours. Good thing I got it for the plane! Guess it’s not just for travel any more…
  • Keep doing the lymphatic massage that I learned last week at PT, as well as the exercises. Of course, this would be easier with a partner, but since I’m not with someone right now, it’s all me!
  • Ibuprofen – thank goodness I’m done with chemo and can have it again!
  • Warm compress

None of this is convenient or fun – especially this time of year when things are crazy enough. But it is what it is and I will deal with it and hopefully prevent it from getting worse. That’s kind of the name of the game right now – just deal with it. The daily trips to Dana-Farber for radiation – just deal with it. Taking the Tamoxifen (which I started Saturday) – just deal with it. The hot flashes – just deal with it. At least my hair is starting to grow back…

Oh! Speaking of hair, I got the sweetest compliment at work the other day: this older gentleman, who I have seen around but don’t really know, came up to me in the cafeteria and said, “I hope you don’t mind my saying this, but I have to tell you. I’ve always thought you were an attractive woman, but now that you’re bald, it’s obvious that it’s not hair that makes you attractive.” It was so nice of him, I really appreciated hearing that, especially so randomly.

Now speaking of random (or not so random) acts of kindness: I know I said I was done soliciting donations for Dana-Farber, but this is too good not to share. If you haven’t finished your shopping, consider giving the gift of a donation in someone’s honor. Now until December 31 you can use this special link www.dana-farber.org/yearend and your gift will be doubled! It only works through this link, and only until the end of the year, so don’t wait! And I guarantee anyone you give this gift to will truly appreciate it… I know all of us who frequent Dana-Farber thank you!!!

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My first radiation was fairly uneventful, which I consider a very good thing. I’m praying the next 24 will be just as anti-climactic. But what I observed while at Dana-Farber made me happy. I saw a woman who (apologies for judging a book by its cover) appeared to not be very well off be given a small tube of lotion that I paid $25 for without blinking. You could tell by watching and a bit of eavesdropping that she was incredibly thankful. I don’t know, maybe her insurance paid for it, maybe someone else, who knows – but what I do know is that Dana-Farber makes sure you have what you need, whether you can afford it or not.

So what do I want for Christmas? Well, to be honest, my first wish is for it to be last February, turning 38, with long brown hair, 25 pounds lighter, feeling like I’m on top of the world and ignorant of most things cancer. But since I don’t have a magic wand or fairy Godmother, that would be a waste of a wish. And I hate wasting something as special as a wish. This is what I want for Christmas:

I honestly don’t want anything more than this for Christmas. So if you insist on getting me something, please have it be a card saying you made a donation to support something like this – or wherever you want to help those who really need it. And if there isn’t something specific you want to contribute to, fundraising continues for the 2012 Boston Marathon Jimmy Fund Walk until December 31, so even if you already sponsored me, you’re welcome to do so again (I promise this will be the last time I solicit support for the 2012 walk… 😉 ) or visit my brand new Jimmy Fund donation page here. Seriously, supporting the place that has made this horrid year a little bit easier is my only Christmas wish. I can’t help thinking the same thing I thought last year when I was making donations for presents in honor of Mirany (and you can donate in her honor here) – what could we possibly need more than our health?

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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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Today my nana, my dad’s mother, turned 101. And honestly, she hadn’t changed very much in all the years I have known her. Yes, she has gotten older in body, and forgets things a bit more now than before, but her spirit and persona are just the same as ever. She is still fiercely independent. Incredibly strong. Strong willed. Proud. And fueled by her family – particularly her great-grandchildren and great-great-grandchildren! Years ago – I believe at her 90th birthday – someone asked her what has kept her going all these years. Her response? “As long as my grandchildren and great-grandchildren need me, I’ll be here. They keep me going.” Well, Nana, we will all always need you. You are such an inspiration, we love you and are all thankful for each day – and year – we have with you!

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