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Posts Tagged ‘diagnosis’

Being bald

Posted in Boston, Cancer, chemotherapy, Denial, family, hair, Planning, recovery, work, tagged , , , , , , , , , , on July 9, 2012| 10 Comments »

Yup – that’s me, today. I went to work today bald. No hat, no wig, no scarf. And it actually wasn’t even that hard, even though I swore I would never do it. I’ll never forget – what seems like a lifetime ago but was probably just a month – sitting on my couch with Mike, who was helping me pick out a pre-bald short haircut from a magazine, and talking about going back to work during chemo. “You mean you’ll go to work bald?” he asked. I said, of course, when I’m feeling well enough, but never actually bald – I’ll wear hats and wigs – I would never go bare-headed. I guess some times you really don’t know what you’ll do until you do it!

To be honest, it’s not that I am taking a stand or anything, or suddenly felt comfortable with how I look. I just hate wearing things on my head. I am not a big one for hats and the wigs just feel weird. So I just stopped wearing them at home, and finally just said screw it, why wear one out, either? Of course, I will be smart and continue to wear a hat at least outside so I don’t burn my poor scalp, but otherwise have simply given up on vanity and worrying what other people think. I did consider whether to actually go to work without anything on my head, simply because I didn’t want to make anyone else feel uncomfortable, but I talked it through with Nick and he assured me it would be fine. And he was right. Everyone at work was fabulous, encouraging and supportive, as usual. I am very blessed to work there!

Being bald isn’t as bad as I thought. In fact, I never really thought about it at all before all this. A few people, after being very sweet and complementing me on the shape of my head (at least it’s not completely deformed), mentioned how they imagine their head. I really never imagined mine – and hoped I’d never find out! But here are some pros:

  • I never worry about if my hair is messed up.
  • It is much cooler (temperature-wise).
  • It takes one second to wash my head.
  • It takes one second to dry my head.
  • It takes no time to style!

I do practically jump every time I look in the mirror or see my shadow, because I constantly forget I’m bald – it’s just not how I see myself in my head. I still have long brown hair in my mind. And I know I will again someday… well, who knows if it will be brown, based on how many people have told me stories of hair growing back totally different! Yet another thing that we’ll have to wait and see.

But for now, I will embrace the bald, and hold my head up high, as advised by my wise son. And when people give me those strange looks on the street and I can tell they are wondering if I’m sick or a skin head, I will smile reassuringly if they seem nice or give them a glare if not. And when I’m feeling up to it, maybe I’ll try the blonde wig or the long brown one. But who needs hair? It takes so much time! 😉

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Running

Posted in Boston, Cancer, chemotherapy, family, hair, recovery, work, tagged , , , , , , , , , , , , , , on June 23, 2012| 1 Comment »

I just ran four miles along the Charles. It felt soooooooo good!!! It was my first time running in forever – since just before surgery, which was almost eight weeks ago.  And when I say running, it was back to my very beginning – walk/run intervals of one minute each the entire time. It was also the first time running that I didn’t have to pull my hair back in a pony tail, which kind of hurt, but at least it is easier – no hair in my face! 

As I got ready to go for my run, I had a mini-heart attack thinking my iPod was  also in my stolen backpack, but thank goodness it wasn’t – and that my running shoes weren’t either! There are certain things I HAVE to have with me to be happy and comfortable on my runs:

  • My iPod – can’t run without music
  • My GymBoss – interval timer – best little thing in the world. So simple, it clips on, you can set for any intervals and it doesn’t interfere with your music or phone – only $20 at www.gymboss.com
  • My phone set on MapMyRun so it calculates everything from where I am to how far I’ve run, what my average pace is, current pace, etc. (and for safety and occasional texting)
  • Water – duh, must stay hydrated
  • Chapstick if I can find somewhere to put it
  • Sunglasses or a hat
  • My keys (kind of important to get back in the house) 

I know – who AM I??? Running and I have always had a love/hate relationship. For the first 37 years of my life it was mainly hate. I was never really athletic – was always the overweight young girl (kids called me thunder thighs in fifth grade) and never lost that feeling of being chubby, even when I wasn’t any more – still look in the mirror and just see a fat face. And when we had to run a mile in school, I was always amongst the slowest and wheezing away – long before I had asthma.

But I saw how incredible  Tara looked as she ran (and did pilates and ate right) off 60 pounds in the last couple years and I thought it might just be a necessary evil to try.  And I had been supporting our Boston Marathon Running Team at work and have great role models in Phil, Matt, Kai, Andrew, Steph and others who made it actually look fun.

So in the fall I tried it, starting with a Couch to 5k program recommended by my boss who had recently started running, too. I soon abandoned that for my GymBoss, though as  I wanted to do it at my own pace. It wasn’t easy, but it did make me feel better and I fairly quickly started dropping the pounds – and the dress sizes. Overall, it was more than 20 pounds and about four dress sizes. And that was with hardly watching what I ate at all – just running intervals (usually 3 or 4 minutes run to 1 minute walk for 3-5 miles, 3 or 4 times  a week).  

That was one of my frustrations about this damned disease – that I would have to stop running for a while and I didn’t know if I’d ever be able to really get back into it again – since it took me 37 years the first time! But I’ve actually been chomping at the bit – especially since I heard I had to have chemo and the steroids would make me put on weight, and since I found I still love food, even when it tastes bad during chemo (figures, huh?). I do not want to be fat again. It’s going to be bad enough being bald and pimply (also thanks to the steroids) and not being able to get a good tan. Never mind not having real boobs – I have to do something!!!

So I must run whenever I am feeling up to it. Tara practically glowed when I announced to my wig party friends that Dr. H had given me the ok to start running again. “I never thought I’d hear you say that and sound so excited!” (And Tina and Vanessa just smirked and shook their heads. 😉 ) Actually, it was the very first thing I asked him when he walked in the room and I was so excited I barely noticed the huge expansion syringes.

But boy do I feel the expansions now! As soon as I started the first ‘run’ interval and put my arms in the running motion, it hurt! Especially my right side. But while the pain did stay through the entire run, it actually eased a bit; it didn’t get worse. So maybe the running will help that, too. My feet also hurt a bit at the beginning, but felt better after the first mile or so. It’s funny the things you don’t think about, though – like how it isn’t even easy to do the same pre- and post-run stretches that I did before surgery. I must remember to keep doing my PT exercises – between those and running, eventually my body will be back to normal! (Ok, maybe I’ll need to learn to eat a little better, too – so many things to work on!)

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Two weeks

Posted in Cancer, chemotherapy, Denial, family, Home, Planning, prayer, recovery, work, tagged , , , , , , , , , , , , , on June 17, 2012| 5 Comments »

I am actually scared to start writing tonight. So much has happened in the last 24 hours, never mind the last two weeks, that I’m afraid if I start, I won’t stop. And I just don’t have the energy like I had… well, even two weeks ago! My sincere apologies for being so silent. Everything has been at such a whirlwind pace, and then I was knocked on my butt – and I’m not sure if I’ll really be back to full speed until this whole nightmare subsides. (I’m done kidding myself it will ever really be over.) But there I go, starting to go on and on, and I really need to just get to the point – well, all the points – the highlights from the last two weeks (although I’m not sure I see most of them exactly as highlights…).

Starting at the end (well, now): I am writing this on my back-up laptop (thank goodness I kept it). And that’s  because last night my new Mac Airbook was stolen out of Tara’s car while we were at the movies. Not only was the laptop in my backpack, but so were my chemo meds. I was very thankful I only had them with me as backup in case I was sick, but had finished the days of ‘must-have’ meds the day before. But still so frustrating and nerve-wracking. I think we’re both still in a bit of shock over it. And I keep remembering other things that were in (of course) my favorite backpack: my favorite pair of running pants, my Hannah Banana yellow shirt, my Kindle charger, my full coupon case and my pink Dana Farber Red Sox hat – and just when I need all the hats I can get!

One thing that I was relieved to find in my pocketbook, rather than lost with the backpack, was the running list I’ve been keeping of all the things I’ve been meaning to write about here. So now I’m going to literally list them and just comment a bit – and possibly at some point I’ll go back and elaborate, but I don’t have time or energy now and I don’t want them to be forgotten… 

  • Going back to work was definitely better than I imagined. The people I work with are amazing – so unbelievably supportive, caring and helpful. They made it so wonderful and easy to be back – and no, I didn’t feel like the circus freak at all.
  • Of course, what’s hard about it is balancing my new reality of being a cancer patient and all that goes along with it – the doctor’s appointments, physical therapy and simply learning what I need to know about what is happening and will be happening to my body – and what I need to do to help it. There is so much to learn and know and do, and not enough hours in the day. I also don’t want that to be my sole focus, as I’ve said before, so work is good.
  • While I tried to take it easy that first week back, there was so much happening, and I was feeling good, so I just kind of got swept into it all – and I think lulled into a bit of a false sense of the worst being over. As if the surgery was the worst part. Ha! Was I wrong! But before we get to that…
  • So I made the most of that one week of having energy, being back to work, and acting normal: Kristen and I went and did our part for the Jimmy Fund by attending the Scooper Bowl – if you haven’t been, put it on your calendar for next year: all you can eat ice cream! Mike gave Nick, Kristen and me tickets to the Red Sox and we had a blast. I joined Alicia for her company’s networking event. I visited Tina and my Goddaughters and was treated to my own personal Memorial Day concert. And Nick babysat for Ella and Will while Tara and I spent a Sunday afternoon dressed up at her work’s garden party.  
  • Amidst it all was a ton of apartment hunting. Long story short, we did find one and will be moving to Brookline on June 29 – just before round two of chemo.
  • Speaking of chemo – round one was on Tuesday. Chaos started Monday afternoon when we realized Nick was sick and he was worried about getting me sick before chemo. It all worked out fine, but he wasn’t able to join us Tuesday morning. But we certainly had a party, with mom, Mark, Tina, Tara and Jay. And Sarah stopped by because Mirany also had an appointment that day. So they gave us a great corner with a view, and in addition to my poison, I was treated to a hand massage, lunch and visits from doctors and a therapist. Quite a full day, peppered with laughter thanks to all and a ton of food courtesy of Tara!
  • While the actual chemo session was fine, the rest has not been so great. I got sick a few hours later. And then had a strange local reaction in my right arm, which luckily went away by Wednesday. But I was still nauseous and exhausted Wednesday – and Thursday, too, much to my disappointment. Nick and mom made it clear there was no even attempting to go back to work Thursday, and I didn’t have the energy to argue. I am still upset to find I am not one of the people to sail through chemo. And not looking forward to the next three rounds.
  • And that may not be the end. My oncologist has now recommended adding 12 more weeks of another chemo drug after we finish these 12 weeks. I’ll explain more about it later – I’m still thinking…
  • Especially now that I’ve seen how just this first bit has wiped me out. Not only my energy level (which is so low) and the faint ongoing nausea and metallic taste, but what I feel like it’s doing with my head. I think slower. I am not myself. And that is so frustrating…
  • Yesterday, before the robbery, Nick and I joined a whole bunch of our family for the Spina Bifida Walk and Roll, as part of my cousin Hannah’s team – Hannah’s Bananas. It was so good to see everyone, and especially to be there for Hannah, but it was depressing that I am so tired after only a mile and a half, even at a slow pace. 
  • And after the walk, Nick and I went to Leane’s and she cut my hair again – this time, as Nick put it, I look like him. It’s supposed to start to fall out later this week and it was still too long for me to handle the chucks of it falling out. And on Tuesday afternoon we have the wig fitting party, and it will be better if I have less hair for the fitting. Leane always cuts hair beautifully, but I can’t bring myself to embrace this cut on me. It is what it is – a necessary step. And I will get through it.

Those are the biggest things, I guess. I know I forgot some things, and I’m sorry. But at least that’s all for right now because I am exhausted and have to get some sleep so I’ll have hope of waking up and functioning in the morning so I can make it through a full day at work!

Thank you again for every ounce of love and thoughts and prayers – I feel and cherish every single one…

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