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Sneaking a peek

Posted in Alone, Cancer, connections, Denial, Dreams, lymphedema, work, tagged , , , , , , , , , , on May 14, 2012| Leave a Comment »

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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You’re never too young or too old

Posted in Cancer, family, work, tagged , , , on April 28, 2012| Leave a Comment »

I had a wonderfully relaxing three days in Florida. I got some rest, some sun and a whole lot of love.

I also realized it will be incredibly difficult to detach from work. This may be a surprise to some, but I really thought it was going to be easy to turn the laptop and blackberry off. Yet I worked some of every day I was in Florida and felt bad not being at work for all the events happening, both planned and unplanned. Then when Vanessa said she’s cutting off the work talk from here on out, I felt like she was putting me out in the cold (for my own good, of course). I take comfort in the fact that I will be able to coax stuff out of her along the way (maybe bribe) – and that I do have other sources! David was right, though: this ain’t gonna to be easy.

But it was so nice to have a few days with this part of my family and somewhat away from all the cancer stuff. I spent as much time as I could with my crazy fun nephews, who I hate living so far away from but who are always so excited to see me, even when I’m not with their cool cousin Nick. And it’s amazing how their minds work. You wouldn’t think they would really get what is going on with me, but when they played the lottery Friday (with the fortune cookie numbers that eight-year-old Hudson instantly memorized), Holden said was that if they win he is going to donate all the money to cancer research.  Not what I’d expect from a six-year-old. I didn’t even know he knew cancer needed research!  I guess you can’t underestimate what young ones absorb and take to heart…

I also found that you’re never too old for your dad to teach you something new. We spent a leisurely morning at the beach treasure hunting. I have always been great at finding beach treasures – at least they are treasures to me: shells, rocks, sand dollars, starfish, hermit crabs. But I’ve never found a shark tooth, although I’ve tried. This time, dad taught me how – what to look for (the shape, the gum line), how to tell how old they are (black are the oldest – billions of years, brown – millions of years and white – most recent) and that they are lighter than rocks and shells so you have to grab them before the water sweeps them away. He started finding a bunch (including a big brown one that’s about an inch wide.) Then I started to catch on and finally found my first shark tooth! I soon found a few more and went home with my pink Red Sox baseball cap full of beach treasures. Dad made me take all the shark teeth – except I gave the first one I found to him.

 

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Making connections

Posted in Alone, Cancer, connections, Denial, Planning, work, tagged , , , , , on April 25, 2012| 10 Comments »

I have not connected with others who have gone through or are going through the same thing as me. Yesterday a woman I work with came up to me and said that when she was going through cancer the number one thing that helped her was joining a support group. Talking and being with people who really understood because they were facing the same thing.

I am sure she is right. It was definitely reading through breast cancer discussion boards – essentially eavesdropping on other women’s conversations – that helped me make the double mastectomy decision. That, and reading about Christina Applegate (and seeing her fabulous new boobs – can I look just like that please?) and watching Giuliana and Bill, the reality show about E talk show host Giuliana Rancic and her husband Bill (first winner of The Apprentice), who happen to be going through the same thing in this season’s episodes.

But I haven’t actually written anything on any of those boards. And while so many of my friends and family have offered to connect me to people they know who have been through this, I haven’t taken anyone up on it. Yes, I guess I’ve still been holding on to that last bit of denial.

You probably wouldn’t know it by talking to me. At work, so many people know that I’m almost surprised when someone doesn’t. As people have heard just that I’ll be out, they’ve asked where I’m going – somewhere nice? Somewhere tropical? Poor Steve, I just spurted “breast cancer” and shrugged. His eyes widened and mouth dropped, and I felt so bad for saying it that way. “I’m sorry,” I explained, “It’s just become automatic.” So it appears I have faced it and am sailing through, but as a handful know, it’s not necessarily true. I have a lot of dealing to do. And I should probably start by making some of those connections…

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