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Archive for the ‘Dreams’ Category

Wishes

Posted in Boston, Cancer, chemotherapy, Denial, Dreams, family, hair, London, prayer, recovery, work, tagged , , , , , , , , , , , , , , on August 6, 2012| Leave a Comment »

I am making a wish on each eyelash that I catch as it falls out. All those wishes have to add up, right? I refuse to waste a wish on anything pointless, like wishing that my eyelashes and eyebrows wouldn’t fall out, although I really don’t want them to. So what am I wishing for? Like birthday wishes, I don’t think you’re supposed to tell or they won’t come true. But I bet you can guess – they’re pretty much the same things that I pray for…

So I guess I can tell you more of the things that I wish but don’t waste the eyelash wishes on:

  • I wish the hair on my head would either all grow or not grow at all – it is so annoying having these patches of hair growing on my head! I really feel like a chia pet. Luckily, Nick is home from London and offered to shave my head again. I think I will be taking him up on that…
  • I wish people wouldn’t worry about me so much. Tonight I told Nick I was going for a run and he looked all serious and said “Really? Ok, but be careful. What time will you be back?” It is sweet. But I really do feel fine, these in-between weeks, after the initial week of hell and the next infusion. I can run, I can babysit, I can work, I can drive. I am good. And I feel bad wishing this – I am so, so thankful so many people care about me. I just wish they wouldn’t worry so much… 🙂 And yes, I am blocking out the incident at Training Camp, but that was also because I was stupid and rushed being better – I was still in that first week post-chemo. I will try to be smarter this next round…
  • I wish I could go to my cheap nail salon and get my regular mani/pedi’s again. Oh how I (and my hands and my feet) miss them…
  • I wish I didn’t have chemo brain. I hate it when I am not at the top of my game. And according to Sue, chemo brain lasts for months and months after the chemo stops. So I won’t be back 100% until well into 2013. Ugh. Good excuse for why I won’t be winning at trivia though. 🙂
  • I wish I had unlimited funds so I could buy more wigs. Now that I’ve started wearing them, they’re not so bad. But I don’t like to wear the same one all the time, I like to mix it up between wigs and hats just to try to have fun with it. Now to buy the electric blue one…
  • And then the most pointless wish of all: I wish I wasn’t sick! I know, as people keep reminding me, I am officially cancer free since the surgery, but the fact is the chemo makes me more sick than I ever felt with the cancer! I do understand why it had to be cut out and why I now have to go through all this chemo to kill all the cancer cells (especially after talking to my friend Laura who had it come back again, even after having a mastectomy!), but it doesn’t mean I have to like it.

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Vacation

Posted in Cancer, chemotherapy, Dating, Decisions, Denial, Dreams, family, hair, Home, prayer, recovery, tagged , , , , , , , , , , on July 20, 2012| 2 Comments »

This was more than just a vacation from work. I thought of it as much as a vacation from cancer as from anything else. I figured since it was my good week – the one just before my next (third) round – and when I wouldn’t have to be taking any meds, I could just forget I was sick for a little while (once a procrastinator, always a procrastinator). But you know that didn’t happen.

A bit of background: we are down the Cape for one week, with about 25 different family members from all sides, staying at three different houses all on the same street we’ve vacationed on every summer since I can remember. Family of all ages has come from Florida, West Virginia and all over Massachusetts. It’s great, like the Waltons or the Brady Bunch. I love it!

So I thought I could pretend all was normal and just feel good and enjoy not being at work AND not being sick. But as soon as I got here, the little reminders started sprouting up. Like others seeing me bald for the first time. And the kids wanting to see my wigs. And having to wear more sunscreen than I’m used to – and being somewhat cautious with the sun in general. (No, I didn’t want a burnt head!)

The biggest, and most difficult for me (and my mother, who was cognizant of it even before I was), was the fatigue setting in. At first I attributed it to the sea air and the sun. But no, it’s the cancer/chemo. Having to take naps and go to bed earlier than normal (although I suppose most don’t see 11 as early), and sleeping in later than most, and later than normal for me. And the hardest of all: getting winded after just a short time running. I can still do the three mile intervals, but am winded through most of it. It’s not a breeze like it used to be – and I hate that! I had wanted to work up to more again, but I think that’s going to have to  wait until after chemo is done.

So I’ve accepted the fatigue and being bald. It doesn’t mean I have to like it, but I will not fight it. And we’ve been having fun with my bald head – Nick even shaved the stubble for me the other day, with all our family sitting around us and chiming in with tips, like a barber shop. And I’m starting to try out the wigs on short shopping trips or out to dinner, just for fun.

Some people have gotten pretty used to me being bald. Nick’s even said he likes it now. I still have a hard time looking in the mirror, but otherwise am fine with it. Others, I know, will never get used to it or even be able to really look at me. Not just because I’m bald, but they can’t handle seeing me sick. It’s hard, I know. But I also know that if they can’t get past the outside and be there for me through this, maybe they never really loved me in the first place and we’re both better off. I guess it’s another side effect of the cancer, right? I tried to take a vacation from it, but it seems there’s no escaping it …

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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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