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Archive for May, 2012

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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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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In a way, my grandfather and I are in somewhat similar places. We both have to do things we don’t want to do in order to live. Of course, right now, he doesn’t have any choice in the matter. I don’t really feel I have a choice, either, although I at least am fully aware of what is happening to me. With Grampa, we’re not really sure how much he understands.

It is still early, so soon after the stroke that they’ve classified as major/severe. He has had many ups and downs in the few days: shown signs of understanding by attempting thumbs up, wiggling his toes and nodding when mom asked if the shoulder that he fell on hurt; had some heart issues; now has pneumonia, which they are controlling; and exerted his frustration by one day pulling the tubes out of his mouth/stomach and the next pulling out his catheter. Sometimes he looks at us like what the heck are we doing, prolonging his life by letting them do all this, but we’ve told him, he’s really breathing on his own and we haven’t done any special life-saving measures, because we know he doesn’t want that. We just want what is best for him, and if he is here, to be comfortable and to have hope that he can completely come back.

It will be a long time until we know for sure the extent of the brain damage, which they say could be extensive. He doesn’t always respond in the same way I mentioned before, but we know sometimes it’s just Grampa – if he doesn’t like a witchy nurse or uptight doctor, he won’t do a thing for them, and then when someone he likes asks him to do something, he tries and sometimes succeeds! It is all in God’s hand – and up to Grampa’s will. So we take it one day at a time, and they tell us that it could be weeks, even months like this. We have a big family, many who are here (I’m writing this from Beth Israel) every day, and we will soon probably start to rotate so someone is with him every day, but not everyone. We are thankful my older brother Steven, who lives in Florida, has joined us for a few days. He is a respiratory therapist in a trauma center and has been able to translate quite a bit for us – and catch some things others haven’t.

For me, I thought the worst was over, but now I’m thinking I’m wrong. At my appointments yesterday (how convenient Dana Farber is across the street from Beth Israel?) we learned that I am not quite as lucky as I thought I’d be. I thought cutting off both my breasts would do the trick. And it did, from what they can tell. However, because of the cancer found in my lymph nodes and my being young for this, I need to have all the follow-up treatments: chemo, radiation AND tamoxifen. Ugh.

I am not happy, but I’m also not about to fight it. I figure I have done everything so far to make sure I never have to deal with cancer again, I am not going to stop now. I’ve already begun regaining my strength – the daily hospital visits to see Grampa and family have helped both my mind and body. Next Tuesday I start physical therapy to really get full range of motion back in my arms, and that day I also meet with the reconstructive surgeon and may begin the expansions, depending how I’m healing (although breast surgeon says it’s looking good).

The following Tuesday the real fun will start. Chemo. That will be most of the day, and then I will have one day of chemo, every three weeks for four rounds. After that, I will have a few weeks off and then start radiation, Monday through Friday, for five weeks. And then Tamoxifen for five years. I know I said it before, but ugh.

What I understand from others is that chemo won’t be too bad at first, and then will get worse each round. The first time I may be sick for a day, the second round for two or three days, the third round for a few days to a week and the final round for a week or two. But everyone is different and I already have prescriptions for meds to combat the nausea and other bad side effects. What is really hitting home is the fact that I will lose all my hair – probably about a month from now, around two weeks into treatment. Argh! It took me so long to grow it, and I actually like it now. Not fair! But what among this IS fair?

I guess what is fair is that I get to live. I was lucky enough to find the lump, pretty much just in time before it spread further, and so what, I had to have a bilateral mastectomy? I do get two new ones, eventually. So what that it’s painful, I’m limited for a while and I have to go through PT? At least I’m young and strong enough to  push through it. So what if I have to go through those treatments and lose my hair? They will eventually be over, there are drugs to combat the side effects and my hair will grow back. And I actually, unlike Grampa, get to plan this all out and understand what I am facing. So I actually think I have a lot to be thankful for…

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Sunday, May 13, 2012

I know, and am incredibly thankful for, the unbelievable amount of prayers being said for me daily around the world. I would appreciate it if you could add to those a bit: we spent today at the hospital with my grandfather, who had a stroke early this morning and fell down the stairs. My instinct, of course, is to pray for him to live, for us all to have more days with him. While he has lived a good, long life – tomorrow is his 82nd birthday! – none of us are ready to say goodbye to him. Who ever is?

But that may be selfish. He is an active, energetic man, in both body and mind, and would hate to be confined to a bed and to not have control over his body – he’s a bad patient, as one of my family members said today. So I am praying for God to do what is best for Grampa – whether that is to take him home to heaven, or to grant us some more precious time with him – and that he hopefully will be well enough to be at his Cape house with all of us this summer, as we’ve planned.

What’s interesting is that through last night’s insomnia, I prayed quite a bit – more than I have in a very long time. It occurred to me that one of the things I have not done enough of lately is pray (yes, you can say ‘duh’). And to not necessarily pray for what I want. I think there’s a lot of truth in Garth Brooks’ song Unanswered PrayersRemember when you’re talkin’ to the man upstairs, That just because he doesn’t answer doesn’t mean he don’t care, Some of God’s greatest gifts are unanswered prayers. So I usually leave it to Him to determine what is best. Even though I don’t always know why some things happen, I do believe they usually happen for a reason. And praying, and putting my concerns in God’s hands, simply makes me feel better.

Interestingly, I prayed last night for today to be different since I’m starting to go stir crazy in my house, but I didn’t expect the hospital to be my change of scenery – although it was nice to be with many family members I haven’t seen in so long. (Why is it that it often takes tragedy to bring people together?) It was very tiring; many encouraged me to go home and rest, but I had a make-shift bed in the waiting room and could rest there as well as I could at home. (And thank you, Nick, for going home to get my pills – couldn’t have made it through the day without them…) It really was an exhausting day. Another thing I prayed for last night was to no longer have insomnia but I didn’t expect a long day at the hospital to be what would tire me out – I do believe I will be asleep before 2 a.m. for the first time since I was being drugged to sleep each night.

With my grandfather, we do have hope. I left him just a couple of hours ago. Throughout the day he went from completely unresponsive to now moving quite a bit in bed, squeezing our hands, opening one eye off and on, and nodding in response to some questions. He can hear, understand and acknowledge us. But he still has a very, very long way to go, should God chose to let him stay with us for a while more. There may be another blood clot, and he is having heart issues on top of the stroke. So thank you for adding him to your powerful prayers and positive thoughts. I know he and my entire family will appreciate them as much as I do…

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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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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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I feel like I’ve been in a waking coma. My eyes have been open, I’ve been talking and somewhat eating, moving between my bed, the couch and the bathroom. The biggest diversions being a trip back to the hospital and a couple of walks down the street escorted by Mike, to get my legs moving and keep me from going stir crazy, and those wore me out for days. I haven’t read a book, heck I haven’t read a magazine article. I’ve only watched two full movies, a big night with my family on the couch. I’ve barely touched my new, light laptop, so hardly no email and no Facebook – just the thought made me tired. And I haven’t been great at returning texts, although that’s what I’ve probably been best about, since they are short.

I was ok with all that – something I never thought I would be. I thought just because my body was going to be laid up, my mind would be racing and fully functioning – boy, was I wrong. Last night it started, though. My mind began to get energy, and to feel cooped up. This morning (and by morning I mean 10ish) it was even more active, urging my body to catch up with it. I turned the laptop on and began writing this. After many breaks (can only look at the screen so long), I’ve written this post. My mind is pleased. While it is just a baby step, I feel quite accomplished, like I’m on the right track.

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