Feeds:
Posts
Comments

Posts Tagged ‘side effects’

Facing Cancer

Posted in Boston, Cancer, chemotherapy, connections, Denial, Discovery, family, hair, Planning, recovery, tagged , , , , , , , , , , , , , , on April 10, 2013| 2 Comments »

It worked. My determination to look forward and focus on the future really did help to pull me out of my funk and get me back on track. But what I also realized was that I couldn’t keep (and I can hear certain people snorting at this even before the words hit the screen) burying myself in work and denying anything is different. So I decided to finally – one year later – face cancer.

Just after my last blog entry called Facing Forward, I was on Dana-Farber’s website and found that a new session was starting called – ironically – Facing Forward After Breast Cancer Treatment. As you’ve probably figured out, while I love talking to people about their problems and helping them figure everything out, I’m not the biggest fan about talking to others about my feelings, especially if it could bring tears. But I realized that if I’m ever really going to move forward, this could really help. So I went.

It was the first time I’ve ever been in a room where the vast majority of women had hair practically the same inch or so length as mine – made me smile! As did hearing why these sessions were created: “Life as you know it is changed. You’re vulnerable. You’ve lost some control. You have a sense of time being limited.” Yup, yup, yup, yup. “During treatment you’re busy, focused on fighting.  Then it all stops. The transition can be very difficult. People assume since you’re done with treatment you should be ready to move on. And you feel guilty for not being there yet.” Exactly. Clearly I was in the right place.

It was explained to us that this is a “psycho education group.” So not a straight support group exactly, but a combo with expert speakers, the first being a medical oncologist. You would think after all the time I’ve spent with doctors during the last year that I would know it all – but I learned several new things – and felt good that I was able to answer some questions for others and help them, too. Some of what surprised me, I think I have heard before but probably just didn’t want to believe – or hoped that I’d be the exception. Not seeming so… As many of you know, I’ve been frustrated because I’m not back to where I was running-wise. Well, one thing I learned was that fatigue typically lasts about two years after treatment. Two years!!! So I guess my slow three miles (more walking than running), three months our of treatment, is better than nothing. You know what else can last two years? The neuropathy – the numb tingling feeling in my fingers and feet. I’m so sick of that – but guess it may be around a while longer…

But I’m here. And I’m basically healthy. And I have the best friends and family in the world. And I love my job. So I’m happy. And thankful. And I’m on the right track.

So I didn’t stop there. On Saturday, I took another step: I went to the Young Adult Cancer Conference at Dana-Farber. And I was really glad I did. More than the sessions, it was meeting other people around my age who have faced (or are facing) cancer, that made it such a worthwhile day. Everyone has a story, and they are all so compelling, no matter how straight forward they are. Kicking off the day was Mike Lang, a cancer survivor who, with his wife Bonnie, has completely transformed his life to help others facing cancer by taking them on adventures through Survive and Thrive Expeditions, as well as helping them tell their stories through movies, like Wrong Way to Hope. He shared his amazing story and clips from his latest venture: Valleys, which you can watch on Huff Post – Generation Why. Try to watch any of his work without shedding a tear – I dare you! It is so raw and true – we can all relate. What I really love is his motto: Reflect. Refocus. Rebuild. Live. Yup – that is exactly what I am doing!

Read Full Post »

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 »

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?

Read Full Post »

« Newer Posts - Older Posts »