Archive for May, 2012

Sunday, May 13, 2012

I know, and am incredibly thankful for, the unbelievable amount of prayers being said for me daily around the world. I would appreciate it if you could add to those a bit: we spent today at the hospital with my grandfather, who had a stroke early this morning and fell down the stairs. My instinct, of course, is to pray for him to live, for us all to have more days with him. While he has lived a good, long life – tomorrow is his 82nd birthday! – none of us are ready to say goodbye to him. Who ever is?

But that may be selfish. He is an active, energetic man, in both body and mind, and would hate to be confined to a bed and to not have control over his body – he’s a bad patient, as one of my family members said today. So I am praying for God to do what is best for Grampa – whether that is to take him home to heaven, or to grant us some more precious time with him – and that he hopefully will be well enough to be at his Cape house with all of us this summer, as we’ve planned.

What’s interesting is that through last night’s insomnia, I prayed quite a bit – more than I have in a very long time. It occurred to me that one of the things I have not done enough of lately is pray (yes, you can say ‘duh’). And to not necessarily pray for what I want. I think there’s a lot of truth in Garth Brooks’ song Unanswered PrayersRemember when you’re talkin’ to the man upstairs, That just because he doesn’t answer doesn’t mean he don’t care, Some of God’s greatest gifts are unanswered prayers. So I usually leave it to Him to determine what is best. Even though I don’t always know why some things happen, I do believe they usually happen for a reason. And praying, and putting my concerns in God’s hands, simply makes me feel better.

Interestingly, I prayed last night for today to be different since I’m starting to go stir crazy in my house, but I didn’t expect the hospital to be my change of scenery – although it was nice to be with many family members I haven’t seen in so long. (Why is it that it often takes tragedy to bring people together?) It was very tiring; many encouraged me to go home and rest, but I had a make-shift bed in the waiting room and could rest there as well as I could at home. (And thank you, Nick, for going home to get my pills – couldn’t have made it through the day without them…) It really was an exhausting day. Another thing I prayed for last night was to no longer have insomnia but I didn’t expect a long day at the hospital to be what would tire me out – I do believe I will be asleep before 2 a.m. for the first time since I was being drugged to sleep each night.

With my grandfather, we do have hope. I left him just a couple of hours ago. Throughout the day he went from completely unresponsive to now moving quite a bit in bed, squeezing our hands, opening one eye off and on, and nodding in response to some questions. He can hear, understand and acknowledge us. But he still has a very, very long way to go, should God chose to let him stay with us for a while more. There may be another blood clot, and he is having heart issues on top of the stroke. So thank you for adding him to your powerful prayers and positive thoughts. I know he and my entire family will appreciate them as much as I do…

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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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Warning: Somewhat explicit content. Don’t read if you don’t want to know too much or face details (I wish I could heed this warning!)…

Oh. My. Gosh. I never knew showering (alone) could be so tiring! Late yesterday I had the fourth and final drain removed. I was so happy because in so many ways it signals freedom: no more required bed rest, a decrease in medication, I can begin raising my arms and doing the beginner arm exercises, and, most important, I only had to wait another day to shower – no more sponge baths!!!

After spending the morning visiting with Tina (and snacking on her incredible avocado dip), I took a deep breath and headed for the bathroom. And then I froze. As much as I was dying to get completely clean, it suddenly occurred to me that in order to do so, I would need to get naked. And then I might see.

This might surprise some, but in a way I am still in denial. I have not looked at it yet. I am pretending they are both still there. Every time the doctors checked it in the hospital, I didn’t look. Of course, I didn’t (always) clamp my eyes closed or deliberately look away, either, since I didn’t want them to notice that I was avoiding it and tell me – as the doctor in a book I read did – that I had to look and face it before leaving the hospital. And each time I’ve been back at the hospital, for the drain removals and dressing changes, I’ve also averted my eyes. And otherwise, including during my baths, I had my surgical bra with the dressings on, since I couldn’t get the area wet yet. But now I’ve been given the all clear.

I did everything I could think of in the bathroom, like brushing my teeth and weighing myself (and texting Tara to ask how much she thought my boobs weighed to see if maybe I really have lost weight, even if you don’t factor cutting them off – which made me feel a bit better) before taking a deep breath and getting undressed.

Yes, other than a brief accidental glimpse, I was able to avoid seeing my chest. I guess it’s somewhat easier when there’s basically nothing there sticking out. But you can also do a lot with your eyes closed. Of course, when you’re trying to get thoroughly clean, you can’t avoid some touch, and that was difficult enough (mainly feels like a mound of muscle on the outside, while I still feel so tight and achy, like an elephant stepped on my chest and caved it in, on the inside).

But boy, I never thought I could get so tired just washing my hair! I can’t lift my arms very high, so I alternated bending my head down (eyes closed of course) and bending it to each side and just using that arm. I was completely wiped after – and I didn’t even attempt anything as complicated as shaving!

I needed a nap immediately, I could barely stay on my feet. As I drifted off, I thought how I guess the next time someone in a review or interview asks if I have something I have to work on, I guess I could add ‘being in denial’ to the list. And I will work on it – just not yet…

And then I contemplated whether to share something this intimate or not – and obviously decided yes. Some may wonder why, so I’ll tell you: because as much as I loved the book I recently read about a woman’s similar experience – and the movie version that I just watched the other night online – I was really surprised at how little time was spent, especially in the movie, on this part – the recovery, pre-additional treatment. It feels so long, painful and tiring, and each day is something new. So I thought since many others have not gone into it, I would…

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