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Posts Tagged ‘reality’

It’s only hair…

Posted in Alone, Boston, Cancer, Dating, Decisions, Denial, family, recovery, work, tagged , , , , , , , , , , , , , , on May 30, 2012| 16 Comments »

I cried a lot today. I guess a lot of things hit home. Now that we’re not at the hospital every day with Grampa, and the planning and service is over, I have been alone for the first time practically since before the surgery. I began getting somewhat back to normal during the weeks with family at Grampa’s bedside. I weaned myself off the painkillers and naps. I began physical therapy. I started walking more and more. Much of my strength has returned, now it’s working on endurance and regaining full range of motion in both arms. And so I got everyone to agree I can return to work next week – I can’t wait!

On the top of my to-do list is dealing with the issue most nagging me: my hair. From the moment I heard I had to have chemo, I knew I would cut it all off before it began to fall out. I said I’d have fun with it. Try something I hadn’t done before. I was gung-ho. Let’s do it! Then the day – today – arrived. And I wasn’t quite so eager…

Luckily, my favorite hairdresser is my friend Leane. She’s given me my best haircuts ever. And she was so sweet when she heard I was doing this and said she would be honored to cut it, under the condition that I not pay her. An incredible gift! So I knew I would be in good hands. And timing-wise, I wanted to do it both before Alivia left for London (tomorrow) and before my parents went back to Tennessee (Thursday). And before I started back to work.

But when we finally confirmed a time early this afternoon, I burst into tears. (Of course I was in a public place – Brigham and Women’s for PT – surrounded by strangers. Thank goodness for large, dark sunglasses!) I was so angry and sad! WTF?!?! First I lose my boobs and now my hair??? How unfair is that??? I finally, for practically the first time in my life, actually like my hair – not a normal thing for a woman. I waited a long time for this hair. I almost had it to where I liked it in November 2010 when I got a call for an interview at Genzyme. The career adviser I was consulting with told me I HAD to cut my hair short. That I looked much too young and no one would believe I was as experienced or trust me without a more polished, short ‘do. So I listened to her and had my hair cut at an expensive salon in Atlanta (where I currently was on my road trip). And I hated it! I did get the job, but I have the feeling I would’ve still been hired had my hair remained long.

Now a year and a half later, my hair is just the right length, with layers and body (and yes, a few more greys). And now I’m going to go bald. F@*$! Yes, I acted nonchalant, searching through magazines, asking other’s opinions, talking a good game. Really, I was stifling the screaming girl inside. And she busted out today.

I DON’T WANT MY HAIR SHORT!!! I DON’T WANT TO BE BALD!!!

Proven fact: Men prefer women with long hair. Oh, and boobs. I think in this case, two strikes means you’re out. What guy would want to be with a bald, boob-less woman???

But yet again, I don’t have a choice, do I?

I know psychologically I won’t be able to handle seeing my long strands falling out. And I don’t want to be one of those people who clings to her hair and attempts to comb over bald spots. So off it needed to come. And tonight it did.

I cried most of the drive to Tara’s house, where Leane was to cut it. Tina and Nicole (Tara’s friend from high school – not to be confused with my Nicole from high school) joined for moral support. We looked at a few hair styles and Leane asked which I preferred. “My hair. Long hair,” I whined. “Oh, I know honey…” all my friends chimed in with soothing voices. That made me realize I was acting like a child and had to just suck it up and do it. I took a deep breath and told her to do what she thought was best and chop it off. And she did.

And I love it. I really do. I knew she was the best woman for the job – thank you Leane! If I can’t have my long hair, this is the absolute best I could have in the interim. And best of all, I had exactly 10 inches cut off: the minimum amount needed to donate to Locks of Love. So my hair will be used to make a wig for a disadvantaged child who needs one. That’s way more important than being on my head!

So now it’s time to start looking at hats and wigs because in about a month, all this short hair will be gone, too. But I think I’ll go back to my denial and forget that for a few days and just enjoy my new ‘do…

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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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Shower time (Content warning)

Posted in Alone, Cancer, Denial, Home, recovery, tagged , , , , , , on May 10, 2012| 5 Comments »

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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