I had my follow-up appointment with Dr. H on Friday. I was relieved to hear that he thought everything looked good, that it’s healing and surgery went as well as could be hoped. Phew. I’ve heard real-life nightmares from friends who ended up with one breast up near their throat, and another who had a large extra round bump, like she had three breasts. I couldn’t be more thankful to be getting more and more back to as close to normal as possible, for the first time in now close to two years. (Has it really been less than two years??? It’s amazing how much can happen in that span of time…)
The other thing Dr. H told me was that just because things are good so far, doesn’t mean I get to resume my regular pace and activities. He explained that we barely escaped without a drain in my right breast (the one that was radiated, hence not as straight forward as the left) and that if I don’t take it easy and limit use of my right arm, fluid could build up and that would not be good. So while I no longer need to lie still (which I really did as much as I could but probably not as much as I should), I do need to be cautious. No lifting anything heavy, running, exercising, etc. for three weeks. Then, so long as all still seems good, I can start running, lifting, etc.
To be honest, right now I am just so thankful to be able to stretch! My arms were supposed to stay down at my side at first and I would literally wake in the middle of the night trying to stretch because my body was so longing for a good stretch! Now I can, but do it gingerly and stop when it starts to hurt. I also feel better because I’m able to massage my right arm again: I had visions of the lymphedema kicking in and my arm swelling beyond recognition. Luckily, that didn’t happen. And I can do pretty much anything with my left side and arm, so that helps.
And everyone has been wonderful as usual: Mom stayed with me for the first few days, then Cory, and then Nick watched over me. (Nick and I ate better than we have in a long time, between mom, Cory and Tara cooking for us!) And I don’t return to work until Jan. 2 so, other than the holidays, spending time with family and friends, and general home stuff, there’s not much I need to do anyway. So I will do my best to continue to take it easy, and simply enjoy the holidays…
Posted in Cancer, family, lymphedema, radiation, recovery, Uncategorized | Tagged breast cancer, double mastectomy, family, holidays, reconstruction | Leave a Comment »
It’s not easy taking it easy. It’s never been something I’m good at. So while my chest hurts, that pain is more bearable than trying to stay still.
Surgery went really well on Wednesday. Dr. H was able to go in the same old scars and he was able to avoid drains. I was very relieved to wake up and learn both of those facts. I got to choose my painkillers, so picked those that impact my mind the least (can’t stand being fuzzy from medications), and went home that afternoon with one overarching order: to do absolutely nothing for at least one week.
I’m not supposed to lift my arms, have to keep them by my side, and am supposed to just rest, staying on the couch or in bed. Then after the first week or two, I can start getting up and slowly doing stuff again. The line that most made me smirk? “No lifting more than 10 pounds for one month.” I think my purse weighs at least 10 pounds! It’s a good thing most of my holiday shopping is done…
So I’m doing my best but am already going a tiny bit stir crazy. I so appreciate that my mom is here, cooking, cleaning, doing laundry – but it is so hard to watch someone do those things in your home, and not get up and help at all! I’m taking deep breaths, though, and trying to stay as still as I can…
I was allowed to take a shower for the first time today and that was good, except it’s really hard to wash your hair without raising your arms… but at least it wasn’t the psychological shock that showering for the first time after the last surgery was. I knew what to expect this time, and I know how much better it will get over time.
For now I’m just very thankful to feel somewhat normal again. Yes, my chest is sore and achy, but it is no longer hard as a rock. (And yes, I admit to poking myself several times and smiling at them being squishy once again!)
So while it is definitely not easy taking it easy, I also don’t want to mess up Dr. H’s handywork, or cause myself any more pain than I’m already in. So I will do my best to follow doctor’s orders and continue to rest… I see lots more movies, books and possibly some online retail therapy in my future…
Posted in Boston, Cancer, family, Home, recovery | Tagged breast cancer, cancer, family, help, mastectomy, reconstruction, recovery | 2 Comments »
I think my head is going to burst. Way too many things running through my mind, and I really can’t focus on any of them.
Today I was 100% focused on helping Tina and family do our best to convince the Parole Board not to release Scott’s killer. It will be several weeks to several months before we will know their decision, but I am confident we did everything possible and pray that justice will prevail.
In fact, I was so focused, it wasn’t until I went to my car and heard the voicemail from the hospital that I remembered I was supposed to call them to confirm my surgery by 3 p.m. Oops. Luckily they were still there and confirmed when I returned their call.
(Pleeeaaaasssseeee do not be offended if you are one of the dozens who’ve asked me this question) but no, right now I am not too excited for surgery. (Tissue expanders are being replaced with implants – finally.) I don’t feel like I have any of that emotion to give. Yes, I am thankful that I will finally get these rocks off my chest and start to feel some semblance of normal again, but no, it’s not the end. It will be months for these wounds to heal, and then I can do the nipples. And even then, although it will be physically over (besides the lovely lymphedema), there will still be somewhere between 4 and 9 years more of Tamoxifen. Honestly, it will never be over, because then, after I go off my wonder drug, I will worry about recurrence…
This feels somewhat like when chemo ended and people wanted me to celebrate. I’m just not feeling it. However, some have suggested a birthday party for my new boobs each year – now that is an idea that makes me smile! I’m not sure how my youngest goddaughter will feel about sharing her birthday with them, but when she’s older she’ll probably get a kick out of it – at least I know I’ll never forget the date! (And it seems so much more fun to remember that date than dates like when I found the lump, got the diagnosis or had the double mastectomy…)
So between the hearing, surgery, birthdays (my 10-year-old Goddaughter and my 102 year-old Nana), holiday parties, decorating, shopping for the holidays, trying to make sure all is wrapped up at work (and push it all out of my mind from now on), etc., etc., I’m fried. I’m actually looking forward to being drugged up tomorrow (uh, well, I guess today now since it’s 1 a.m.). Maybe it will quiet my brain enough that it will reset and all will suddenly be clear. Ha! I can hope, right? At least I know I’ll be amused with mom and Nick taking care of me until Cory’s down this weekend. And with Tara and Mark at the hospital, too, I know I don’t have to worry about anything. And no, Tina, there will be no skyping to laugh at my drug-induced musings – although I’m sure they will have fun telling you all about it…
Posted in Cancer, family, lymphedema, prayer, recovery | Tagged breast cancer, cancer, chemo, doctors, family, lymphedema, mastectomy, prayer, reconstruction, tamoxifen | 2 Comments »
Last Thursday I spent the day with 10,000 women. (A dream for the few vendors lucky enough to have a table, and yes, very long bathroom lines.) I’ve always wanted to go to this conference - The Massachusetts Conference for Women. I knew it would be a day of learning, female camaraderie and, most of all, inspiration. It was all that and more. Cory asked me that night what my favorite part was and I was stumped. “Ooooh, that’s hard,” I said, “all of it!” And when Tara and I were comparing notes after – since we decided to divide and conquer some of the sessions – I looked at her, shook my head and said, “Well, now we just need to figure out how we’re going to change the world for the better.” That’s how you feel when you leave an incredible conference like that.
Those of you who follow me on Twitter or are friends with me on Facebook know I was posting quotes throughout the day. (If you missed it and need some inspiring words of wisdom, go back to December 5 on my Twitter feed.) What has stuck with me more than any other was not any of the people or sessions that I went there to see, but a surprise last minute addition: Nobel Peace Prize winner Leymah Gbowee. She is a Liberian peace activist, trained social worker and women’s rights advocate. She told us in a very straight, matter-of-fact manner, as if we were a bunch of girls gathered for afternoon tea and catching up, how she helped to bring together Christian and Muslim women to help end Liberia’s Civil War in 2003 – when she was just 31. Over and over in my head I keep hearing her saying the words, “exploit your collective power.” Basically, she was saying – much more eloquently – hey, you! If you believe in something, find a bunch of other people who believe in the same thing, join together and you can make anything happen! And I know she’s right.
One of the main reasons I accepted my job at Genzyme was because I was told repeatedly by all the people who interviewed me that I could make a difference in the lives of people with rare diseases. And that has proven true, especially as I got more and more involved in the Genzyme Running Team (GRT) and helping to engage employees, create patient partnerships and raise funds for NORD (the National Organization for Rare Disorders). The Running for Rare Diseases Genzyme Boston Marathon Team – a small subset of the GRT – is such a prime example of what Leymah is talking about: the relationships they are building, the increased awareness of rare diseases like Niemann-Pick Type A, Homocystinuria, and Pompe, and the funds they are raising – none of this could be accomplished by one person alone. It is because we are all joined together for the common purpose that we can make a difference.
Today I am going to be joined with another group, to try to exploit our collective power in another way: to prevent a killer from leaving prison. On May 31, 1993, Scott was murdered when he tried to stop two men from robbing the Walpole McDonalds, where he was working. Today, because of a deal he cut, the one who actually pulled the trigger is eligible for parole. I will be in court with my best friend Tina – Scott’s Irish twin – and her family to do everything we can to prevent him from returning to the streets and taking more lives. Tina has gathered many written testimonies and signed letters protesting his release, and several of us will be there to read as many as we’re allowed, to make it clear that it was not just any life taken that day: it was Scott Christopher Down, loving brother, son, friend. A hysterical, determined, unique blonde boy with the most incredible sparkle in his eye. He was always determined to help change the world for the better. Don’t worry, Scott, you live on in Tina, Jason, their incredible children, your parents, friends and all of us. We will not let you down. xoxoxo
Scott Christopher Down
Posted in Boston, work | Tagged prayer, running, work | 4 Comments »
I wasn’t going to post about #GivingTuesday. To be honest, I was a little annoyed with all the e-mails that flooded my e-mailbox and solicitations that filled my actual mailbox the last couple days, all begging for my donation. It’s not because I’m a scrooge (although that could be debated) or anti-giving (you KNOW that’s not true), rather because I think giving should be done all year long, not just one day in December. But that’s not what I’m writing to say.
Today one of my friends from high school repeated what I went through just over a year and a half ago: she went to Brigham and Women’s for a double mastectomy because just a few weeks ago, the day before her 40th birthday, she was diagnosed with breast cancer. Not what you plan for 40. Since that day, I have been trying to help her the best I can, answer all her questions, explain to her the reality of what to expect, fill in the details that no nurse or doctor can tell her.
And my heart breaks for her, and her family. I know she is strong, and not only is she going to beat this, but kick its ass, just like another friend from high school is doing right now, busting her way through radiation. (Yay Bonnie!!!!) It’s because her life is now changed forever, and change is never easy. And because this is a never-ending journey that’s going to have a lot more downs than ups for a little while. And that little while will seem like forever…
But she is very similar to me in many ways. She is an incredibly strong and determined woman. She told me from that first day that she was going to kick this and was already ready to have the double mastectomy. She is naturally positive – which is so great not only for her, but her kids and husband. The more she can remain positive, so will they. And, I think tied with the optimism for most important, she has an incredibly large and loving support system. They will get her through this. I know I never could have gotten through this without all of you…
And I also don’t believe things would’ve been nearly as easy for me if I’d been anywhere else but Dana-Farber and the Brigham. I’m confident we’ve both been in the best hands there. So that is what is compelling me to write on this Giving Tuesday. Maybe you don’t spread your giving throughout the year. Maybe today is your day. If it is, please consider giving to Dana-Farber and The Jimmy Fund – you can even support them by holiday shopping in their giving catalogue. Or, another great related organization that could really use your support is Bright Pink, which is focused on educating and empowering young women about breast and ovarian cancer.
Honestly, there is no shortage of needy and deserving organizations to give to today, or any day. Put your money where your heart is. Think about what really matters. Happy #GivingTuesday.
Posted in Boston, Cancer, connections, Discovery, Fundraising | Tagged Boston, breast cancer, cancer, Dana-Farber, Giuliana Rancic, mastectomy, radiation, The Jimmy Fund | Leave a Comment »
“Why, why, whhhhhyyyyy???” I woke up whining. And I hate whining. But it’s also very cold and I hate the cold. And while I love that running lets me eat and helps me not get huge, I don’t love running. (Sorry Phil.) And have I mentioned that I am not a morning person? I thought so. Yet here it is, Thanksgiving morning, when really I don’t need to be anywhere before noon, and what am I doing? Getting up. Early. To run. In the cold. Why? Because this year I can.
I never think of the weather when I sign up for these 5ks. I think of the cause (in this case Multiple Sclerosis – it’s the Boston Volvo Village 5k Road Race for MS) or the other people running (some of my Genzyme Running Team peeps) or the great people watching (people dressed up like turkeys, pilgrims, Indians and I’m sure there will be at least a few Santas).
I did, however, start to think about the weather yesterday, when I heard how incredibly cold today was predicted to be. Andrew asked where and when to meet, and I told him I’d be there if it was above 30 and not raining or wicked windy – I can’t afford to get sick with surgery less than two weeks away. Then, last night when I was snuggled warm in bed, and was thinking how crazy it is to be out in the cold period, I texted Tara.
Me: Remind me there’s no excuse not to run in the morning. I won’t get sick and it doesn’t matter that I haven’t run in two weeks or how slow I am.
Tara: Slow and steady! Something is not just better than nothing, it’s an investment in you. I’m running/walking a turkey trot in the morning. You’ll feel better for doing it.
And I know, as usual, she’s right.
So I woke up and rolled over to check the weather, figuring above 30 and I’m good, since the beams of light shining into my room already told me it’s not raining. And what does the weather say? 30 – and then “feels like 19” – ugh! I could’ve texted Andrew, told him I didn’t want to risk getting sick (which is seriously the big fear in the back of my mind, but also an excuse), but I didn’t. Because then I started thinking about last Thanksgiving.
Last Thanksgiving I couldn’t run, regardless of the weather. Thanksgiving week 2012 I finished my 24th week of chemo. It was the last, but my body ached more than ever, I had tons of numbness and tingling in my fingers and feet, and the lymphedema had just started. And I had radiation still ahead of me. Oh, and I was bald. No eyebrows, no eyelashes and no hair on my head. Running was the last thing on my mind – I was just thankful I could get up in the morning!
So today I am running. Because I can. Because God is good and has given me a great life, and a second chance, and I don’t want to waste it. 2013 may not have been the easiest or best year, but it’s been a hell of a lot better than 2012. I am so thankful for all my family, friends, and work buddies who have stuck by me, encouraged me and even pushed me when needed. And I am thankful for the new people in my life, including someone who makes me smile every day, even when he’s not in the same state! I have incredible hope and confidence that as great as things are now, they are going to keep getting better. And for all that I am beyond thankful.
Andrew just texted.
Me: Yup. Will be there shortly.
So I better stop typing and go freeze, I mean run. Happy Thanksgiving all! Xo
Post run update: Yup. I ran. And froze. But it was worth it!
Posted in Boston, Cancer, chemotherapy, family, hair, lymphedema, radiation, recovery, work | Tagged bald, Boston, breast cancer, cancer, chemo, family, hair, lymphedema, mastectomy, prayer, radiation, running, side effects, work | 2 Comments »
With Joncille and Aunt Patsy, October 2011
I. Hate. Cancer. I want to scream and cry and hit things. But none of it will bring my cousin back.
I found out this morning that my cousin Joncille – my dad’s cousin, so my second cousin if you want to get technical – passed away. She gave in to stupid cancer. She has been suffering off and on for years, and, according to my uncle, didn’t want to fight any more. I was shocked.
I got to know Joncille when I visited her and her husband in Sugar Land, Texas, on my road trip. (You can read about it here: http://amysamerica.com/2010/11/09/finding-my-roots-on-day-61/) They welcomed me into their home with open arms and I couldn’t have felt more at home. It was like we were long lost friends. It was actually the beginning of a great friendship. Joncille was a wonderful support through my treatment. A constant cheerleader, encouraging me to remain positive, to trust in God and to know that I really would get past it all.
“I would like you to know, though, that this too will pass, and you will move through this hardship one day at a time and in the bright future it will seem like a bad dream,” Joncille wrote to me – and she was right. She sent me love, thoughts and prayers for strength, courage and healing. And they gave me strength and will to continue to plow through treatment.
“…grab hold of the positive things. Doing that will absolutely save your life and your sanity,” she wrote to me.
“From one who knows, bald ain’t too bad. One swish with a wet wash cloth and you have washed, dried and styled your hair and are ready for the day. And again, from one who knows, it grows back.” Yup, right again.
And when I found out I did, in fact, need radiation, Joncille gave me a new way to look at it: “I do want to warn you that when you first see the tattoo that marks the spot to radiate, you will feel that you have been marked as a CANCER VICTIM, but YOU ARE NOT!!!! They are marking a survivor. I knew a radiologist many years ago that envisioned the power of the Holy Spirit entering her patients as she applied the radiation. I held that vision in my mind when receiving mine. I promise that there is a life after cancer. It just seems like a never ending saga right now. Hang in one treatment at a time and before you know it they will all be over.” I adopted that vision from Joncille, and it was such a comfort…
I feel robbed. It’s not fair. We didn’t get enough time together. I want to hear more of her stories. I want to take her up on her offer to return to Sugar Land with my Aunt Patsy, who was one of her best friends. Joncille and Aunt Patsy remind me of Tara and me, cousins, confidantes, travel buddies and dear friends… and that just makes it all hit home even more.
No, life is not fair. I guess we all know that by now. And life is short. So don’t waste it. Spend time with the people you care about. Tell them that you love them. Be a real friend. Cherish the time you have. You don’t know when it will end.
Posted in Cancer, chemotherapy, connections, family, hair, prayer, radiation, recovery, Road trip | Tagged cancer, chemo, diagnosis, doctors, family, hair, prayer, radiation | 4 Comments »