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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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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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Peace and progress

Posted in Boston, Cancer, connections, family, Home, prayer, recovery, work, tagged , , , , , , , , on May 24, 2012| Leave a Comment »

Grampa is at peace. We lost him the other night, which was absolutely what was best for him, given the circumstances. It’s a small comfort to those of us left behind, as we would prefer to cling to him here, but that’s not fair, either. So we let his body go and all keep with us the pieces of the man who helped mold each of us in different ways. For me, I will always remember the grandfather who bounced me on his knee chanting about the duckies; introduced me to my love of theater; was my first minister; spanked me, my older brother and cousins when we got into mischief; took me to the top of Mount Washington; and welcomed us at the Cape. He furrowed his brow as much as smiled, and we loved and will miss both.

I apologize to all those who’ve commented on how silent I’ve been lately. It’s really been an overwhelming two weeks – in a totally different way than the preceding ones. From Mother’s Day when Grampa had his stroke, we’ve spent at least part of every day at the hospital, luckily surrounded by family. Tara rightly pointed out that one small silver lining was the timing of all this, in that at least with this happening during this point of my recovery, I was able to be there for him and my family, which certainly helped me. (None of us ever thought we would – or wanted to – know the Longwood district and all the hospitals so well. But we’re constantly thankful to be in Boston with some of the best hospitals in the world!) Now it’s planning and preparation for his service this weekend (details here). I’m doing a write-up on him for the funeral home’s web site, but struggling: it’s the hardest thing I’ve ever written. And I am beyond touched that Ginny and the rest of the family decided to direct people to donate to Dana-Farber for breast cancer research in lieu of flowers.

At the same time as all of this was happening, I also was running across the street from Beth Israel to Dana-Farber and Brigham and Women’s for my appointments. I had my first physical therapy (PT) appointment, which both felt like progress and hurt. I’ll continue PT twice a week for the next few weeks, in addition to my exercises at home. Also in the hurting category: I had my first tissue expansion injections with the reconstructive surgeon. The four giant syringes intimidated me at first (uh, do I really want boobs that bad???), but the process was fine, not nearly as bad as I expected. (I closed my eyes, although my mom was brave and watched.) Mom warned me not to get too excited about not hurting, as they gave me numbing stuff first. And boy was she right! I am still in pain that almost rivals the original surgery – no wonder he’s spacing these injections out to every four weeks! The highlight for me (in addition to now having slightly larger mounds where my breasts used to be) is that I am tentatively cleared to go back to work on Monday, June 4 – I really can’t wait. I will just need to take time off as necessary for all the appointments/additional surgeries and for when (if – as I am still dreaming I won’t be) I am sick from the chemo, which will now begin on June 12.

Also this week, my Dad and Maggie surprised me by driving up from Tennessee (where they went after I left them in Florida). My father was close to my grandfather and wanted to be here for him, as well as for me with all of this fun cancer stuff, and to help my 100-year-old Nana with things around her house, now that she is (momentarily) willing to accept a bit of help – boy do I know where my stubbornness comes from! (As well as some of the strong, independent woman DNA, although I am lucky to have that on all sides of my family!) It is comforting to have them here – and simply always good to see them, as it was when my brothers were both here last week.

This has definitely all been a reminder on the importance of family – including your closest friends who you consider family. Nothing is more important than spending time with the ones you love. You may not always see eye-to-eye, you may have knock-down, drag-out fights, you may not always be able to stand each other. But when it matters, you’re there for each other. And hopefully in the days in between you spend time together. It doesn’t matter what you do, as long as you’re together. Some of Nick and my favorite times were sitting on the deck at the Cape, simply talking with Grampa and Ginny and whatever aunts, uncles, cousins were around. Those are moments we will always treasure, and wouldn’t trade for the world. We love you Grampa , and miss you so already.

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