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Archive for January, 2013

Baby Bird Hair

Posted in Cancer, chemotherapy, connections, family, hair, prayer, radiation, recovery, tagged , , , , , , , , , , , , on January 20, 2013| 4 Comments »

As you know, while this was a big week with my ending radiation, I haven’t been in the mood for celebrating. Nick and I had a nice small dinner out Tuesday with mom and Mark, and are now starting to think about doing more celebrating in February and March (more on this to come…), after I say good-bye to 38. The absolute highlight of my week, though, was exactly what got me through these last 10 months: the amazing outpouring of affection, support and genuine happiness for me from all the people in my life. The hugs, toasts, phone calls, texts, e-mails, blog, Facebook and linked-in messages. Not a day goes by that I am not thankful for each and every person in my life, regardless of how long it’s been since I actually saw them. One message from an old friend from high school really struck a chord, and she told me I could share it with you:

Hey Amy,
Congrats on your last day of radiation!! So I have a story that I thought you might like to hear. I was on FB and a picture of you came up in my news feed. My oldest daughter was sitting next to me and saw your picture. She said “Momma, she is pretty and look she has baby bird hair like Tori (my niece) use to. Is she getting better like Tori did, mom?” I told her all about you, how we went to school together, how you have a son named Nick, how you traveled all over the United States and how INCREDIBLY STRONG you are! So back story on “baby bird” hair… when my niece was 15 she was diagnosed with cancer, and went through a year of aggressive chemo treatment. She was a 15 yr. old girl for who losing her hair was a bigger deal than the three tumors that they found in her body. Maddie (my daughter) was young when we found out about the cancer and in the beginning Tori would wear her wig when Maddie was around. She said she didn’t want to scare Maddie and upset her. After about two weeks I asked if Tori would please not wear her wig while Maddie was around. I wanted her to see what Tori looked like and not be afraid of people who look different. We got to my brother’s house one afternoon and Tori was not wearing her wig… Maddie was a little taken back (she was 3 ½) so of course she was a little confused. I had Maddie feel her head and touch her hair, she loved the feeling and said she had “baby bird” hair. We all thought it was funny but we also all got tears in our eyes that this beautiful little girl could make my niece feel like a princess with just one comment like that. Baby bird hair stuck with Maddie and now at 10 years old when we are out or she happens to see someone on TV she makes a comment about how beautiful women/girls look with their baby bird hair. She understands that it is what is inside, not on the outside that matters. She saw your picture, her first thought was how beautiful you are, then after I told her all about you she said… “Momma she is beautiful inside and out!” On your last day of radiation… please know that there is a little girl who may not know you but thinks that you are beautiful and hopes that you beat this disease just like her cousin did. I thought I would share our conversation with you, I know the last year has been a tough one (to say the least). Our conversation made me even more proud of her than I already am. I hope this finds you well and with your spirits high! Always thinking of you and sending prayers your way!
Love, Kim

I read this to my mom when we went to dinner and we both cried our eyes out. Thank you so much, Kim and Maddie! Messages like these have been my lifeline! And I am excited to let anyone who hasn’t seen me lately know that slowly but surely I am progressing past ‘baby bird hair.’ I now have real eye lashes and eye brows, too. I don’t cry when I look in the mirror any more – in fact, I actually smile. When watching a movie with my friend Kevin, he looked over at me and said “You’re not used to your hair yet, are you? You keep playing with it!” And he’s right – I love just feeling that it’s there. It’s also become clear, now that it’s starting to fill in around my forehead, that I will have the same crazy cowlick hairline as before, although I swear I’ll never complain about it again. A bad hair day will beat a no hair day, any day!

amyjan2

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An end – and a beginning

Posted in Boston, Cancer, chemotherapy, Decisions, family, hair, prayer, radiation, recovery, work, tagged , , , , , , , , , , , , , , , on January 15, 2013| 8 Comments »

Sometimes you just can’t explain it. I should be thrilled. I should be excited. I should be beaming from ear to ear. Instead, as I left Dana-Farber this morning, I just cried my eyes out.

Strangely enough, I felt just fine going in. It has become such a part of my daily routine. I wake up at 6:15, have a little something to eat and then shower. I don’t put any lotions or deodorant on because I’m going straight to radiation. I get dressed for work except bring my bra and necklace in my bag because I know I’m going to have to take them off as soon as I get to Dana-Farber, so what’s the point of putting them on? I walk out my door by 7:20 and pull into the Yawkey Center garage by 7:35. As a radiation oncology patient (who they know is normally in and out), I get to park myself in the valet area. I say hello to all the valets, go down a floor to P2, and walk through the very cool gene display. I say hello to the folks at the radiation oncology desk, scan my pink card to check myself in and head on in to change. I quickly swap my jacket and shirt for to hospital gowns: the first open in the back and then one over it open in the front, like a bath robe. I stash my stuff in a locker and typically by the time I close it, I’m called in.

The very friendly staff make small talk as I leave the top robe on a chair and go to the center of the room to lie down on the small metal table, covered in a white sheet. (Picture Frankenstein.) I slip my right arm out of the gown and pull it down to expose my right breast. A round pillow is put under my knees and I raise my hands back above my head, but with a slight bend at the elbows. I shift my chin up and angle my head to the left. I become dead weight then. There are people on either side of me chatting away, as they use the six tiny tattoos on my chest to align me exactly with the machine. They tug the sheet if they need to move me or push my body, but I am not to do anything. I freeze from that moment on. Once they have me where they want me, they leave me alone in the room with the music and the machine. Today it was soothing soft rock, love songs – I think because it was all women. It can be anything from classic rock to Michael Buble. One day, I left singing songs from Grease, the musical.

Along with the music of the moment, the giant machine whirs to life. Typically it will start on my left side so I have a perfect view of my right breast and the red beams in the reflection. For the first 10 or 15 appointments, I pretty much kept my eyes closed the entire time. Heck, it was embarrassing lying completely exposed on a hard table with your arms raised over your head, your scarred fake breast the center of attention and your muffin top pouring out over the top of your pants or skirt – especially with young, cute men on staff. And add to it that you’re not allowed to move at all the entire time. I was so nervous at first that I would have a jerk reaction – or that I wouldn’t be able to lie still in that exact position long enough. My heart would start beating so fast, and my breathing got heavier, I was afraid even that would mess it up! But it soon became relaxing and I looked forward to those few minutes alone in the room, music playing, the humming machine and me.

Lots of people gave me different advice about what to think about while I laid there:

  • God healing me. I love that one, and would often at least start there.
  • Nothing – clear my mind. I tried really hard to do that. Never lasted long.
  • Focus on healing and forget work. Again, I really tried hard, but it was typically work that ruled my mind, even there.

What actually consumed my mind more and more each time was how to tell this story for others who will go through it. How to help make it easier for them. And how lucky I am.

Before I can think much more, the machine finishes its rotation, the whirring ends with a click, the doors open, and the friendly staff return. “All done – you can put your arms down now, Amy.” They lower the table, I cover myself back up, hop off, scurry to put the second robe back on and we wish each other good days. I go back to the changing area, finally put on my deodorant and then lotion up the now raw, red and even a bit blistering breast and underarm. I get dressed, touch-up my make-up, grab a bottle of water and wish the reception staff well. I go back to P1, pay my $5 to park (thank goodness it’s under an hour) and head off, typically arriving to work about 8:15.

Today was a tad different – I had to get Nick, so he could drive me to work and take the car. And of course today was the day that as I left the hospital, I had to hold back the tears. They flooded out as soon as I closed the car door in the garage. I hate crying in front of people so I had to get it all out before I got 10 minutes down the road to my apartment to get Nick.

So what the heck is with the tears? I guess tears of relief. To be done, and to be ok. I am so thankful to have made it through these last 10 months relatively easily. (Mainly thanks to my incredible support system – my strong family, loving friends and supportive work colleagues.) I know it could have been so much worse in so many ways. And the bottom line is I’m here and healthy and on the road to being me again.

Just writing that line makes me start crying. I know I’ll never be the same person I was. I know I will continually wonder in the back of my head if the cancer is going to suddenly appear elsewhere in my body. I know I will never look at my body the same. I know I will never again say I hate my hair, no matter what it looks like. I guess in a way, I’m still mourning the old me, who disappeared on April 30 when I had the double mastectomy. And just as I was getting used to being The Cancer Patient, really getting the hang of it, the biggest chapters (chemo and radiation) are ending.  I guess I feel a little lost and have to figure out who I am now. I want to be the old me but know that’s a lost cause. No use dwelling on the past, so I will now get to work on Amy version (almost) 39. The new, hopefully improved, healthier and happier version. Who has an extra hour back in her day now that radiation is over. I am going to put it to good use…

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And then there were two…

Posted in Cancer, lymphedema, radiation, recovery, tagged , , , , , , , , , , on January 12, 2013| 4 Comments »

I can’t believe I only have two more days of radiation left. I go in Monday and Tuesday mornings and that is the last of my daily visits to Dana-Farber! It’s become such a way of life, it will be strange not to be there every day. Of course I won’t be able to miss it really, as I will be there for physical therapy in a couple of weeks, and then for the re-expanding soon after that. And then it will really be the lymphedema that dictates how much I am there until the implant surgery this summer.

On the lymphedema front, so far, so good. The overall volume in my arm hasn’t changed, it’s just that it is pooling around my wrist, so I need to give that area a bit more attention when doing the daily lymphatic massage. But overall it’s not getting worse, and I am allowed to stop wearing it (except for when running  and doing other exercise, including major housework – ha!)  beginning next week. I just need to keep track of how it is feeling and looking so we can see if there’s a pattern to any changes. And, of course, go back for the check-up in a couple of weeks and if it gets worse. A good friend of mine who has been cancer-free for five years is now experiencing much worse lymphedema, and that does worry me, but all I can do is take it one day at a time and try to manage it the best I can.

For now, I think I’m doing pretty darn well. The radiation has gone as well as can be expected. When Dr. W looked at my breast the other day (she checks it once a week), and saw how red, raw and peeling it was, she said that it is normal to even a bit better than normal for this point in the treatment. And I thank God every day (multiple times a day) when I put ointment on it and under my arm and my chest (the radiation is done in a pretty big square, just with more concentration on my breast and lymph nodes area) that I can’t feel anything in that area. It’s one highlight of no longer having any sensation in my chest. It looks really, really painful, though – like your worst raw, peeling sunburn. I do have some discomfort, a bit under my arm and chest, but nothing like it would be if I had all the feeling, thank goodness. Interestingly, it’s as if the scar has kind of peeled away with it, too. Not that it matters, though, since I’ll be sliced open in the same places for the implant surgery. Oh well.

And yes, I am feeling the other major side effect, which is extreme exhaustion. Here it is noon on Saturday and where am I? Still in bed, with my lap top, writing this. I am going to drag myself up and out for a run (how can I pass up running outside in this relative warmth???), but am not pushing myself this weekend. Almost every night after work I’ve wanted to simply go home and crawl into bed, and that is just not me. But it should get better after next week. After all, I can do anything just two more times, right?

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