Feeds:
Posts
Comments

Posts Tagged ‘chemo’

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

Read Full Post »

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…

Read Full Post »

Back to (Radiation) Reality

Posted in Boston, Cancer, chemotherapy, Decisions, Denial, hair, radiation, recovery, work, tagged , , , , , , , , , , , , , , on December 10, 2012| Leave a Comment »

For about two weeks life was almost normal – no treatments (just visits to the hospital), work five days a week, some of the chemo side effects fading and my hair (slowly) growing back. I felt myself slipping back into the good old denial and fooling myself that cancer doesn’t exist in my life. But starting tomorrow, it’s a new reality: radiation.

Just like with the chemo, it’s been a bit of a crash course in radiation. I admit I haven’t exactly been paying as much attention as perhaps I should have (part of the denial thing), but now I’m cramming. The folks in Radiation Oncology at Dana-Farber are – like everyone I’ve encountered at Dana-Farber and Brigham and Women’s – great. They talk and walk you through it all so even those of us who aren’t too medically inclined have a clue what’s happening. I had the mapping session where they figured out the treatment field (on me) and gave me six tiny tattoos to help them correctly position me at each appointment. Then on Friday I had the dry run, where they took x-rays to make sure they got the mapping right, and walked me through what will happen for each of my next 25 visits.

Radiation Therapy (From the Breast Radiation Guidelines sheet from Dana-Farber): Radiation therapy is a painless treatment, similar to an x-ray. It uses high-energy x-rays to damage the DNA of cancer cells so that they are unable to repair themselves. Radiation also affects normal, healthy cells. Unlike cancer cells, normal cells are able to recover from radiation damage.

So starting tomorrow, Monday-Friday for 25 days (except Christmas and New Year’s Day) I’ll end my work day by running over to Dana-Farber for radiation. Several friends have given me tips on getting through it, and I am hoping to sail through. Then reinflation, a few months of rest, surgery for the implants, nipples, more tattooing, and then…

Tamoxifen. You may have heard the news last week: the results of a big study were just revealed and it determined that 10 years of tamoxifen is better for life expectancy than five years. Of course. That’s just my luck – just when I thought it couldn’t get any worse! So frustrating…

But at the check-up with my oncologist Friday (well, substitute oncologist, as mine just had a baby – her first, yay!), she said that I shouldn’t worry too much about it right now. A lot happens in the medical field in five years, and by the time my five are up, who knows what the recommendation will be. With my luck it will be to take it forever, but whatever. We’ll see.

There is some good news. I get to have the port taken out of my arm soon, which will be wonderful. And the best news of all: I ran today. Well, that was preceded by some not great news. I asked the oncologist when the numbness and tingling in my feet, legs and fingers will stop and she said it could be six months, a year or even never (although that’s rare). I had been waiting for my feet at least to be normal before getting back to running, since I’m such a klutz anyway. But there’s no way I’m waiting that long – I can’t stand being this out of shape, and want my clothes to fit right again. So this morning I went for my first run in practically forever.

I actually cried (happy tears of course) as I walked into the cool air in my running gear. It felt so good to get back out there! Of course, that only lasted a short time. It was like I’ve never run before. I was only doing 1:1 intervals and I was hurting by the time I hit a mile. I only did one more because I had a pain in my side and felt like I was going to throw up. (So pathetic how out of shape I am…) But I was proud I didn’t fall and two miles is better than none. It’s a start.

And tomorrow – uh, today, as I just realized it’s after midnight – is another start. Radiation. And it will be fine. I got through chemo just fine and I can get through this.

Read Full Post »

« Newer Posts - Older Posts »