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Archive for June, 2012

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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I asked to go back to work early. Was it the right thing? Who knows. It is how I am programmed. If I’m not in bed, I should be at work. Even as a child, when it was snowing really bad out but school wasn’t called off, my mom would tell me I could stay home anyway. But I wouldn’t – if school was in session, I was supposed to be there. People would claim to be sick to stay home from school or work, but that’s something my mom always warned me not to do – don’t ever lie and say you or anyone else is sick, or it might come true – simply bad karma (although I don’t think she used that word). So I never did.

I know, I know, I am sick. But I am off the painkillers and don’t take naps every day any more. I now feel well enough to leave the house, to shop, to go to dinner, to walk around the city (as my doctor’s have encouraged me to do – the healthier I am going into chemo, the better it will be for me). And if I feel well enough to do those things, why not go to work? Nick reminded me I was told I should take a minimum of six weeks, up to 12, to recover and I’ve only been out five. (I can’t even believe it’s only been five weeks – it feels like surgery was a lifetime ago.) But I think I can do it. And want to do it – for many reasons:

  • I love my job. I like what I do every day, the people I work with, our mission. It makes me happy. I miss it. And I feel guilty not being there (even though I know I shouldn’t).
  • Work distracts me from the cancer. Thinking about chemo. And going bald. I don’t want my life to be all consumed with it, although I know I can’t hide from it either.
  • I only have a total of 13 weeks of short-term disability at full pay. I would really love to stay in that and not slip to long-term disability (60% pay), which would make life difficult. And with at least one more surgery where I will be out one to two weeks and not knowing how I’m going to feel or how long I’ll need to be out each round of chemo and during radiation, I need to conserve my time.

I know I can’t let Workaholic Amy take over – I will need to take it slow (and know my colleagues and bosses will support this) and listen to my body, so that I can be strong and healthy through chemo. I will not be working my normal crazy hours. And I am actually not allowed to lug my laptop back and forth on the bus and T. I will be smart about this. I will pace myself – as Nick keeps reminding me to do. I will balance work with what I need to do for my health: continue physical therapy (I can now raise my hands straight up to the ceiling, sleep on my side with only a little pain and only take ibuprofen a couple of times a day rather than 24×7), go to all my doctor’s appointments, get plenty of rest, try to teach myself to eat right and exercise as much as I can.

So physically I think I can do it. And mentally I know it will distract me. Otherwise, I am nervous. I feel kind of like I did in September 1991 when I returned to high school for my senior year and was nine months pregnant. I remember walking in and down the hall, my red blazer barely buttoning around my giant belly. Mike, Jay and Mike were with me, both to support and to protect me, as I was scared of the looks I would get and the whispers around me. I know this isn’t the same, but I still feel somewhat like the circus freak show. I just want to be normal. And treated normal. It’s times like this I wish I was a little more private about my life so people wouldn’t know I had a bilateral mastectomy and cut my hair because soon I will be bald. Yes, I know, ironic, as I’m typing this into my blog. But I am doing that because I know this will help others who are going or will go through the same thing as me.  And if nothing else good comes out of this stupid cancer thing, I hope I am at least able to help a few people in this way.

So am I ready? I don’t know. But I guess I’ll find out…

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