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Posts Tagged ‘lymph nodes’

My friend Lisa had her first chemo session at Dana-Farber yesterday. I think I was more nervous for her than I was when I went through it! There was no need, though, as she is one of the bravest, most positive people I know. There is no way she’s going to let this stupid cancer mess with her and her fabulous family. Frankly, cancer chose the wrong woman when it entered her cells.

But because I was nervous, I wanted to make sure I passed all I learned through my experience on to Lisa. Not wanting to forget anything, I made a list (on a bright pink post-it note, of course):

Lisa

  • All different
  • Tired
  • Food tastes
  • Eating/weight
  • Eyelashes
  • American Cancer Society (Wig website/Look Good, Feel Better)
  • Wig fitting
  • Lymphedema (sleeve/massage)
  • Insurance
  • Nails
  • Super B vitamins
  • YOU

Pretty random, huh? That’s the thing – so many of the things that are a big deal in your cancer life, you’d never expect. And there is so much happening, so fast, so much to read and absorb, it’s hard to distill what you really need to know. So during lunch, I ran over to Dana-Farber to sit with Lisa and download what I found to be the most important, like…

  • The all important disclaimer that every single person is different. Everyone’s body reacts differently to things – while my arm would get cold while the poison traveled through the IV into my veins, it didn’t bother Lisa. While I loved having my girlfriends at every chemo session (kind of like Sex and the City / Hospital Episode), she may prefer to be alone or just with her family. I was really lucky and didn’t get as sick as I expected from the chemo, and hopefully Lisa will be the same, although I have friends who didn’t want to do anything but sleep through it.
  • You can’t anticipate if you’ll lose or gain weight. Right after my first chemo, my mouth got the metallic taste and I thought for sure I’d hate food and lose weight (yay!)… but of course that only lasted a couple of days, my taste buds returned and food was what made my nausea go away. So of course I gained more than 20 pounds. But you know what? It didn’t matter! My mantra was “whatever makes me feel better” – which included food and retail therapy. And yes, I’m still losing those last couple pounds and trying to pay the credit card bills, but heck it was worth it, because those things made me feel better.
  • Part of that retail therapy were my many wigs, which I passed on to Lisa yesterday – and encouraged her to let her children play with, to help them get used to the idea. She texted me last night that her youngest put on her Little Mermaid dress with the red wig – love it!!!
  • Along with the bald head, I reminded her that EVERY hair on her body will fall out – not just those on her head. I encouraged her to relish the time that she doesn’t have to shave, as it will be back before she knows it. And I also warned her of what was most traumatic for me: losing not my eyebrows but my eyelashes… I was so happy the day they started growing back!
  • Yes, the stupid cancer can do a number on your self-esteem, but it’s so great that there are programs out there like the American Cancer Society’s Look Good, Feel Better program that not only teaches you how to apply your makeup (including creating eyebrows after yours disappear), but gives you a fabulous bag of goodies! A must to take advantage of.

I could’ve gone on and on, but knew I could never tell her everything, and didn’t want to overwhelm her, especially during that first chemo session. (Luckily, Lisa is happily married, or I’d have had to give all my “single cancer girl” tips, too! 😉 ) Really, everyone who goes through it has a different experience, and all we can do is pass on our experiences, hope the tips help you not feel like you’re the only one going through this and reduce the surprise of things people didn’t warn you about. And that’s the number one thingto remember: it’s all about you.

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One month from yesterday I will be back under the knife (the unbelievably skilled knife of Dr. H) again. This time, rather than shell shocked and scared, I’m eager and excited. Wouldn’t you be, if you lived 24/7 for more than a year and a half with bowling balls (even light-weight ones) on your chest?

I’m so done feeling like a freak every time I hug someone. I do my best to block it out, but it is constantly there, lingering in the back of my mind: “What are they thinking?” “If they don’t know, can they tell?” “Ugh, this just sucks!”

It’s not just the physical feeling that I’m anticipating – to feel somewhat ‘normal’ again – but for that portion of the waiting to be over. I’m not good at waiting. If you know me, you know patience is definitely not one of my virtues, although I try (lots of deep breaths and exhales…). And I feel like so much of this, after the initial rush to surgery, has been a waiting game. Not that anything about cancer is pleasant and how you want it to be, but does so much of it have to take so darn long???

A few people have mentioned how glad I must be that after the surgery it will be over. Oh, how I wish! I’m afraid this is the never-ending gift that just keeps giving. Every day I’m reminded as I take my tamoxifin (for, oh, five or ten years – and don’t you dare get pregnant while you’re on it!). And every time I get a cut, bruise or burn (yes, I’m a klutz) on my right hand or arm and hold my breath, praying it’s not going to swell. And trying to be good and at least wear the sleeve when I run and fly. And worst of all, the voices in the back of my head analyzing my body and pointing out all the symptoms of related cancers – signs of breast cancer recurrence, subsequent cancers or chemo-induced cancers… it’s hard to shut them up sometimes!

So while no, this surgery will not be an end, I do think it’s going to be a great next chapter, giving me a bit more normal in my life, and hopefully quieting some of those voices in my head…

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20130929-152648.jpg This morning I ran the Susan G. Komen MA Race for the Cure along the very foggy South Boston waterfront, at much too early in the morning for a Sunday. Maybe it was the overcast weather, maybe it was the early morning (you know I’m not a morning person), maybe it was the fact that I was there alone, but the day definitely got to me.

I love the breast cancer events – there are always interesting, strong, inspiring women, a shared mission, electric energy, and a lot of pink. So I thought I’d be ok, going alone. I just figured I’d run instead of walk, since I always prefer to run alone, at my own pace. But there was all the build up before: the survivor parade, pictures and dancing warm up. And it seemed everyone had someone there – family member, friend, significant other. I seemed to be the lone loner – although that’s probably not true. Survivor sisters that we are, women around me soon adopted me. “How many years,” one woman asked. “Oh she’s a newbie,” chimed in another, “just look at her new hair! Love the curls!”

Soon I was on my own again as all went back to their loved ones. The bell went off, I put my standard starting song (Fastest Girl in Town by Miranda Lambert, of course) on my iPod and off I went. I tried to focus on the music, but more watched the interesting mixture of survivors and supporters. The little boy with pink knee socks running with his mom, the big teams in their matching uniforms, the moms running while pushing strollers. And then I heard my name and a friendly face! Pat, one of the first people to share his cancer experience with me and to help me see that a positive attitude can beat cancer any day, was walking on the other side of the road. We exchanged waves and big smiles in the seconds that our path’s crossed, and then he was gone. And all of the sudden the tears started flowing and I couldn’t catch my breath. Breathing while running is actually my biggest challenge, so the crying definitely didn’t help. Seeing Pat was such a high point – but then the reality set in. Yes, you can be completely alone in a sea of people. Even friendly, happy, supportive people.

So I guess the lesson I learned is that I just shouldn’t go to these things alone. I go to breakfast alone, the movies alone, shopping alone, but not this. Some things you just need your own team for – even if it’s a team of one friend! Luckily, there are others joining me for all the rest of the Breast Cancer Awareness Month events – and hopefully even more of you will join in. You know my motto: the more the merrier! So check out the dates and events on the right and let me know if you can join us for any – the Nashua Harley benefit is a great night out, and so worth the drive!

Oh – and I should mention that even with the crying bout, I ran my new personal 5k record: 37:10, 11:58 pace. Slow, I know, but fast for me, as I’m typically a 13 minute mile. I think it was all the positive energy surrounding me, and wanting to finish strong, since the bright pink shirt I was wearing said “survivor.”

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Sometimes I forget. It’s actually getting so that I think about cancer less and less. By this I mean it only pops in my mind a few times a day rather than every few minutes, but still. It’s progress. But in the last week or so there have been more and more reminders:

  • Before the walk and trip, I had an appointment with Dr. H. Luckily, my tissues have relaxed and we are finally able to schedule the implant surgery! It’s looking like December. I am so looking forward to not being rock hard and feeling like a freak any more…
  • A dear friend of mine, who has been so supportive and encouraging through my journey, had a double mastectomy. Rest up and feel better, Jillian!
  • And multiple friends had family members or friends die of cancer. Every day I am so thankful mine was caught so early, and that there are treatments for my type. I know I am so blessed…

And it’s because I am so thankful that I want to do all I can to support others in their cancer journey. While most of the time I’d like to erase it from my mind and pretend it never happened, any time retelling my experience or even just supporting things like walks, can help someone else, count me in! And the month of pink is quickly approaching – in fact, events are starting this month:

  • This Thursday, Sept. 19, 7 p.m. is the Bright Pink Experiential Outreach – Enjoy light bites at  Joe’s American Bar and Grill, Newbury St., Boston, while connecting with other Bright Pink women in your community to discuss mutual experiences. This event is open specifically to high-risk individuals. If you have any questions or to RSVP contact Community@BeBrightPink.org.
  • Sunday, Sept. 29, 9 a.m. is Komen Race for the Cure 5k Walk/Run  in South Boston. It is so much fun – so much pink! 🙂 I’m excited not to be bald for the walk this year! 🙂 Oh – and for a couple more days there is a half off deal for registration on Living Social.
  • Sunday Sept. 29, Nashua, NH, Harley-Davidson Second Annual Save Second Base Ride for Breast Cancer. No, I’m not riding in this but encourage anyone with a bike to do it! Info: http://www.nashuahd.com
  • Thursday, Oct. 3, 7 p.m., Revere Hotel, Boston: Runway for Recovery, a fashion show, silent auction and raffle to benefit families who have lost mothers to breast cancer. I’ll be volunteering with some friends from Genzyme, but you should attend and enjoy the evening!
  • Sunday, Oct. 6, 8 a.m., Hatch Shell, Boston: Making Strides Against Breast Cancer Walk I’m really looking forward to doing this walk for the first time – the American Cancer Society helps so many people every day, and certainly helped make my experience better…
  • Sunday, Oct. 6, 11 a.m., Worcester Run Like an Antelope: The 2nd Annual Memorial 5K and 1-Mile Fun Walk in Memory of Megan Proceeds go to Metastatic Breast Cancer Research conducted at UMASS Medical School. I am hoping to make it over to this after the walk, if at all possible!
  • Sunday, October 13, 10:15 a.m., Providence, RI – Gloria Gemma Foundation Pink Pump Palooza, 5K Run/Walk and 10K Run – join Alicia and me on the Pink Pumps for a Cure Team or sponsor us! And hey, it starts and ends at Providence Place, so you can get some good shopping in after…
  • Friday, Oct. 18, 8 a.m., Lucca Boston: Breast Cancer in Young Women Forum for Patients and Survivors (A great day, no matter where you are in your cancer journey – and I will be speaking on the patient panel! And Dr. H will be talking at this event, too, so if you need a fabulous reconstruction surgeon…)
  • Saturday, Oct. 19, 4 p.m. Nashua Harley-Davidson Fashion Show and Live Auction – this is organized and run by my friend Robin and it’s one of my FAVORITE events of the year – so much fun! Fun Harley-Davidson Pink Fashion Show, live auction, huge raffle, great BBQ – and I think I’ll even be getting my first tattoo (a survivors ribbon) at the event. Who wouldn’t want to go witness that? LOL!

I’ll try to keep the event list on the right as up-to-date as possible, but never hesitate to e-mail me if you have any questions. Hope you can join us for some (or all) of these great events. Hey, if we have to be in the world of cancer, at least we can be there together, support each other, learn from each other, make each other laugh and smile – and wear pink! 😉

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I’ve been so bad – totally procrastinating about updating this blog. I hate it when I do that. So much builds up, and then it weighs on me, and I know I’ll forget something… oh well! Deep breath and here are the high (and low) points:

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  • THANK YOU, thank you, thank you to EVERYONE who donated to our Boston Marathon Jimmy Fund Walk! Whether you donated $10 or $150, every single cent helps in the fight against cancer! Together, Heather, Tara, Amanda, Calley and Mia-Claire raised more than $3,400!!! I’m so proud of us – especially the little girls for joining us and being so fabulous and not only walking the 13.1 miles, but even throwing some cartwheels in along the way! And it’s not too late to sponsor our team – please help the girls get to their $100 minimum by sponsoring them here: Team Inspire Boston. Thank you!!!
  • As soon as the walk was done, Tara and I ran (well, not literally – we took the T…) back to my house, I showered, changed and she drove me to my cousin’s wedding. It was so fabulous seeing some of my family who I haven’t seen in so long, but couldn’t help crying as I left because my time with them was too short – but I had to catch a plane…
  • Tara and Ella were the best chauffeurs and cheered me up en route to Logan. The flight was ok (I fell asleep praying as we went through major turbulence, but hey, we landed, so all was good) and my arm faired pretty well. (Damn lymphedema.) I put my compression sleeve on while waiting to board the plane and I could tell by the look in the eyes of the woman sitting across from me that she knew exactly what it was for. She looked so kind and sympathetic, I both appreciated it and wanted to scream. I hate feeling like the girl who had cancer!!! Anyway, after all the walking and the flights there and back, there’s not really much noticeable swelling, and only a little pain, mainly in my hand. I have to get back to doing the massages every day, but I haven’t even been doing that. At least I’ve been wearing the sleeve when running. That’s something, right?

IMG_2856

  • Paris: it was a whirlwind work week. I was disappointed by how dark it was in the mornings, so my visions of waking every morning and running along the Seine quickly vanished out the window. I did get one good, five-mile run/walk in on the last day before my flight. It was great, even if the weather wasn’t that wonderful. The conference was really great, though – especially meeting Sanofi communications people from all over the world and hearing about all the great progress we’re making in the healthcare industry. I’m so proud to work for Genzyme, a company that truly cares about making a difference in people’s lives.

Didn’t I write something a little while ago about slowing down??? Hmmm… don’t think that’s happening any time soon…

 

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I am frustrated. (Hmmm… I don’t think this is the first time I’ve started a blog entry with those words!) Ever since March 2012 when I was diagnosed with breast cancer and my dear friend Heather said “We are doing the Jimmy Fund Marathon Walk in your honor!” I’ve wanted to walk the full 26.2 miles. Last year I was still going through chemo, and hadn’t even begun radiation, so was only able to do the last five miles with the team. I said this was going to be my year!

Now it’s looking like it’s not. No worries, it’s not severe health related or anything truly bad like that, it’s just about listening and being smart. You see (maybe you should sit down, this is such a shock coming from me), I have a lot planned on September 8.

  • First there is the Jimmy Fund Boston Marathon Walk. I intended to walk the full 26.2 miles, beginning at 6:30 in the morning and guesstimating being done about 2 p.m.
  • Then it’s my cousin Rick’s wedding late that afternoon in Wrentham…
  • And as if that isn’t enough for one day, I need to then get to Logan for a 10:30 p.m. flight to Paris. (Yes, Paris – for work.)

At first it was like “great – you’ll be so tired, you’ll conk right out and sleep the whole plane ride!” Ah, but I can’t! We can’t forget the delightful lymphedema in my right arm! I was told that I will need to be up exercising it and walking around every hour of the flight – oh, because of the fear of blood clots, too, because of the tamoxifen. And this is also if my arm isn’t already swollen from the intense walk…

So my close friends and family have all chimed in. And there has not been one person who is in favor of my doing the whole 26.2. In fact, some have quite vehemently told me I will NOT be doing the full walk. (Note: when told I absolutely cannot do something, that usually makes me want to do it even more.) Arrrggghhhhh!!! Why does it all have to be on the same day???

But none of those dates and times are in my control. What is in my control is my body. And how much I put it through that day (and every other). Sometimes I forget I’m not superwoman. That I have limitations. (I know, this blog is full of shockers tonight, huh?) I honestly don’t want to be in pain or have an abnormally huge right arm for my Paris trip. I want to actually be in the work meetings I will be there for, not in a Paris hospital, simply because I was stubborn and insisted on doing it all.

So that’s that. I will only walk the half marathon: 13.1 miles. I’m trying to get over the feeling of letting people down by not walking the whole thing. I feel like I’m letting everyone down (not really sure who everyone is, but just everyone). The Jimmy Fund. Dana-Farber. Everyone who is donating to my walk. Myself. I know in my head that it’s not true; no one else feels that I’m letting them down. I will keep reminding myself that. And I will remember that, thanks to Dana-Farber and all the awesome doctors, researchers, nurses and everyone there, I am here and able to walk and raise money to help kick cancer!

And thank you to everyone who has sponsored me and my team – Team Inspire Boston – so far. I’m one-third of the way to my personal goal, and a quarter of the way to our team goal, all thanks to YOU! If you haven’t yet donated, please visit my personal donation page – even a few dollars – every cent counts and helps us conquer this horrid disease! Or even better: join us for the walk! Any distance is welcome! Go to Team Inspire Boston to sign up and enter code JF2013 for $5 off the registration fee. We’d so love to have you cross the finish line with us!

Oh, and speaking of Dana-Farber and the Jimmy Fund – it’s the annual telethon, which Nick and I were part of this year… and I guess in a way this year, too. I just saw this pop up in my Facebook Newsfeed from The Jimmy Fund:

jimmyfundtelethonCrazy to think that I looked like that one year ago. Boy, am I happy to have hair again! But if (literally) baring my head helped inspire someone to donate and help #KCancer, it was worth it!!!

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So the disappointing news about the surgery wasn’t the worst thing that happened last week. In fact, my conversation on Friday with my physical therapist put the one with my reconstructive surgeon to shame.  It’s taken me until now to digest it all – in fact, I don’t think it’s really sunk in yet, but I decided I need to write about it to get it out of my system and start the new week fresh.Long story short: she told me that I am supposed to wear the damn sleeve and glove every day for the rest of my life. Yes. Every. Single. Day. Forever. You can imagine my response. In my head: F@$% that! In reality: “You’ve got to be kidding me?!” Her response? “No, I am completely serious. You’ve see what happens when you don’t wear it – the swelling comes back. You need to wear it to keep the lymphedema under control.”

The miserable glove and sleeve

The miserable glove and sleeve

She went on to inform me that while she “didn’t want to scare me” if it got worse, she and I would become best friends because we’d need to go to wrapping in which case I would have to go there every day for about two weeks, 7-8 hours a day to have my arm wrapped the entire time. You’ve got to be kidding me. Frankly, this is all way worse in my mind than cutting my chest off.

So every day, must do the massage, and the exercises, and wear the sleeve and glove. Ugh. I honestly can’t comprehend this right now. Just when I think I get to go back to being somewhat normal. I just want to scream.

I came home rip-roaring mad (it didn’t hurt that a family member had called and given me other disappointing/frustrating news), and told Nick all about it, ending with, “They expect me to wear it every day for ever – I don’t think so!!!” (Maybe there were a few bad words mixed in there too…) And once again, Nick just looked at me and said, “Mom, don’t be stupid. If it’s going to help you, you do it.” Ugh. When did he become the parent?

I know logically that he is right. But I don’t want to. I hate the sleeve and glove. They’re grungy even though (or because) I wash them. It’s summer and they’re hot. Mom is going to try making some lightweight, fashionable sleeves to go over the medical sleeves (which are really expensive or I’d get all different ones like those from Lymphedivas). And they make it obvious something is wrong with me. People are always asking me now what the sleeve and glove are for, and because explaining what lymphedema is can be confusing, I just say “cancer related – my arm swells.” And it used to be when they would ask how long I have to wear it for I would say “just a little longer.” Not any more…

So I need more time to let this sink in. I’m not going to say I’ll wear them every day forever, but I won’t rule out wearing it the majority of the time. We’ll see. I have a lot of research to do…

 

 

 

 

 

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