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Posts Tagged ‘lymphedema’

The Gift: A Day with Others in The Breast Cancer Club

Posted in Alone, Boston, Cancer, chemotherapy, connections, Decisions, Denial, Discovery, family, hair, radiation, work, tagged , , , , , , , , , , , , , , , , , , , , , , , , on October 13, 2012| 4 Comments »

I didn’t want to go. It’s a club I never wanted to join and while I do blog about it, I try to ignore it whenever I can and just pretend I’m normal – or at least as normal as I ever was. But because I think knowledge and connections are better than ignorance, I went to the Breast Cancer in Young Women Forum for Patients and Survivors hosted by Dr. Ann Partridge and The Program for Young Women with Breast Cancer at Dana-Farber. While on my way there I was thinking there are so many other ways I’d rather spend a vacation day from work, I have to agree with one of the survivor panel members who called the gathering a gift – because that’s exactly what it turned out to be.

The first thing that struck me as I walked through the door of Lucca, the fabulous Back Bay restaurant where yesterday’s event took place, was that among all the patients and survivors packed into the venue, I was the only one with a naked head. Tons of wigs, hats, scarves, and of course hair, but I was the only one completely bald. I didn’t have much time to dwell on it, though, as I was instantly drawn into conversation at a table by a friendly young woman who asked ‘Are you in our support group, too?’ who, when I shook my head no, replied with a shrug, ‘That’s ok, you can be now!’ And I immediately relaxed and felt accepted.

As soon as the first session started – a patient and survivor panel – I remembered why I really haven’t spoken to many people who have had breast cancer, why I’m not in any support groups and why I am not in counseling: because I hate being vulnerable. I don’t like to cry – especially not in front of other people. There are very, very few people I ever let myself break down in front of, and they see it as a novelty, and either laugh at me (in a most loving way – you know who you are – I have called her when I was crying just so she could smile and SOME good would come of it), or are horrified because they know it must mean something’s pretty bad because it doesn’t happen often.

Needless to say, as soon as the panel started, the tears started flowing. I was not alone, and the well-prepared folks from Dana-Farber had stocked every table with tissues. While each of the stories were heart-tugging in their own way, what it really did was make you think of your own story. How it felt when you first found the lump, had the biopsy, heard the words that you have cancer. It’s a time I try not to think about much for so many reasons. But in a room like that, you can’t help it.

What you also can’t help is feeling rather … normal. My story is just like thousands of women’s: I found a lump, had surgery, am getting through chemo. I’m not running five miles a day after every chemo session like Kristen, I was not about to get pregnant when I was diagnosed like Angela, I don’t have toddlers at home to take care of through chemo like Carie… I actually have it pretty easy. And for that I am thankful (although I wish I had the willpower to run every day).

After getting those initial tears out of the way – necessary as it broke down what few walls were in that room and connected us all; after all, you’re much more comfortable once someone’s seen you cry – it was on to the facts: presentations by Dana Farber doctors, nurse practitioners and social workers. Throughout those sessions featuring the latest research, statistics and Q&A, the little voice in my head kept chiming in:

  • Only 5% of breast cancer patients are 36-40 years old – ugh. Lucky me.
  • Breast cancer is still the leading cause of death for women age 40-49. This has to end. Reminds you why all the pink awareness around is a good thing. We still have so far to go to stop women from dying of this stupid a$$ disease!
  • Good news: research is breaking down breast cancer and the consensus is there will not be one single cure, but multiple targeted, individualized cures for each type in the not unforseeable future.
  • One whole section on why this could have happened – was it because I was overweight? Didn’t heat healthy enough? Didn’t exercise enough? Ate too much red meat? We know it wasn’t because I drank too much, and the fact that I got pregnant with Nick when I was 16 actually reduced my risk for getting breast cancer (although clearly not enough…).
  • Must: stop eating so much ’cause weight gain is a factor in reoccurrence. Must also exercise more because that helps decrease reoccurrence. Because that’s the biggest fear. The elephant in the room. Please make this go away and end my nightmare. I will do anything, including cut off my breasts, which I already did, and poison myself, which I’m doing every Tuesday. So then…
  • Everyone is talking about radiation – am I making the wrong decision, electing not to have it after chemo? Must reassess.
  • Oh crap, I forgot about lymphedema. I need to be somewhat careful. And I have to get a compression sleeve before flying…
  • So much talk about fertility – am I really done? Did I want another child, now or in the future? Should I consider other options? Would be a lot easier to consider if I had a significant other.
  • Am I the only person not married in this room? How is it most women are lucky enough to have a supportive spouse or significant other by their side through all this crap? Thank God for my fabulous family and friends so I am not completely alone. (And much better to be alone than to have a significant other who just makes it worse by giving the pretense of being there for you when he’s really not. Nothing hurts more.)
  • So some kids are embarrassed by their mother being bald. Not mine. He not only shaved my head, but encouraged me to forget wigs, hats and scarves and ‘rock the bald’. You rock, Nick.
  • Stress may not cause breast cancer but it can increase inflammation and other side effects, and make it harder to cope. Which explains my increasing pain as we get to Thursday and Friday each week…
  • And then a glimpse into my future and tamoxifen: the side effects I get to look forward to for five years. On this one, I will pull a Scarlett O’Hara and think about it tomorrow.

There was an upside to being the only bald girl in the room: I was chosen to be the model for the Look Good… Feel Better session put on by the American Cancer Society. Not only did Nicole from Dana-Farber do a fabulous job with my make-up, I got to keep the bag full of make-up that she used on me!

The best parts of the day, though, were definitely those times that you got to talk with those around you. To hear similar stories, to offer advice to those newly diagnosed, to share tips and good books (I’m ordering both the Lance Armstrong one and the one by Kelley Tuthill – thanks Erin!). And to learn more about others trying to help women with breast cancer, like the ladies from the Gloria Gemma Breast Cancer Research Foundation for women in Rhode Island and the Young Survival Coalition. There are so many ways to connect and make a difference. I am going to call this week and see if I can get into the support group that many of my tablemates are in, and if not, I am sure I will make friends with the women in the group that I do join. Because Carie was right: this day was a gift. And I am not going to waste it.

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Sigh of relief…

Posted in Boston, Cancer, chemotherapy, family, prayer, recovery, work, tagged , , , , , , , , , , , on September 11, 2012| Leave a Comment »

Just a quick update before I fall asleep (again) to let all know I am doing well! Week two of the Taxol went a million times better than week one. While I’m not 100% sure what caused the improvement, I think the heavy meds probably helped! I took (following doctor’s orders) three decadron and an ativan early this morning before heading to Dana-Farber.

Once at the hospital, it took a while to find a new vein to use – the one in my left hand is pretty well gone – last week’s infusion was incredibly painful from my hand down through my arm, so we decided it’s fried from all the A/C. (I don’t have good veins – they are small and I’ve never even been allowed to donate blood, so they aren’t loving this.) We can’t use any in the right arm, since all my lymph nodes were removed in surgery – can’t even have blood pressure cuffs on that arm ever again. (Note to self: must do better protecting that arm…) So after trying a bunch of things like hanging my arm down and making fists, covering it in warm, wet compresses, etc., we found a vein that would do – and it seemed to work well, with minimal pain.

After the labs (all looked good), it was back to Benedryl. Had 50 milligrams again and was not sick – yay! Then more Decadron and Ativan, Prilosec and finally Taxol. Throughout all I was pretty hazy, trying to be an active participant in mom and Tina’s conversation, but I honestly couldn’t tell you too much of what was talked about. Yes, they laughed at me somewhat swaying down the hallway when we were through, commenting on my high, but were also there to catch me when I stumbled, so I’ll forgive them! 😉 The main thing was I made it through without any of the major reactions/side effects, and then went home and pretty much crashed.

But tonight I had my energy back and mom and I even took a brief walk to the Brookline Booksmith, the bookstore around the corner, and was surprised to see a blast from my teen years: Molly Ringwald! What girl didn’t identify with her in at least one of my teen favorites, like Pretty in Pink, Sixteen Candles (Aw, Jake!) or The Breakfast Club??? So I had to do it – I bought her book and had her sign it.

Now it’s back to work tomorrow, and to bed now so I can say my prayers and thank God for such a good day. Two down, ten to go!

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48 hours: the move, the fall, a break and the shave

Posted in Alone, Boston, Cancer, chemotherapy, Decisions, family, hair, Home, lymphedema, recovery, Road trip, work, tagged , , , , , , , , , , , , , , on June 30, 2012| 6 Comments »

Where to start… (I can hear Julie Andrews singing in my head: “Let’s start at the very beginning… a very good place to start…”)

The Move

At about this time Thursday night, I was beginning to panic a bit. Mom and I were down to our last couple of boxes and we still had practically the entire kitchen (small as it was, there were plenty of things stored in those tall cabinets!) and my very crowded room. Luckily, Mike showed up with more boxes (my hero!) and we were able to continue our packing frenzy. We finally – after two late night strolls to the package store to procure even more boxes and one to CVS for more packing tape – called it a wrap around 2:30 a.m. Then it was up at 6:30 to finish and get the move done.

I’ll skip all the details and just say that while it took double the amount of time (and hence cost) than estimated for my size place, since I had so much STUFF jammed in there, the movers were great, and we had everything we owned in our new Brookline home by 2 p.m. Nick and I could never have done it without Mom! (Need moving help? We’ll rent her out! 😉 )

The list of things Nick and I want for the new apartment keeps growing – and truly morphed once we had all of our belongings here and saw there’s even more space than we thought. Bistro table and chairs for the patio, coffee table, maybe a new dining table and chairs, possibly a desk for me, a set of wine glasses since mine have almost all broken, new dishes that aren’t chipped … There’s no rush for most, but what I did feel the need to immediately purchase was a fourth bookcase to match the other three I got at Ikea in London. I didn’t want to unpack all my books until I had the shelves in order. So I texted Tina and she agreed to meet me at Ikea.

The Fall

On the way, I made a pit stop at The Christmas Tree Shop to check out their patio sets real quick. FYI, their patio furniture is all connected by little cords on the ground. While walking between, one of the cords caught on my flip flop and – in what felt like slow motion, I went flying through the air, landed on my (you guessed it) right arm, and slid across the sidewalk until coming to a stop by the curb. I just lay there in shock, trying to figure out where the pain was, if I could move and cursing myself for not landing on my left side. I was the only one out there, but a man and his wife were by the door, a few feet away, whispering to each other and watching me to see if I got up. I smiled at them, and pulled myself over to sit on the curb and collect myself.

When I realized how much I was bleeding (palm, elbow and knee), I hobbled inside to the Customer Service desk and they brought out an ancient first aid kit (luckily I had alcohol wipes in my purse since they didn’t have any) and the manager. He took an account of what happened and all my info while I bandaged myself up. And then off he went to have them fix the patio sets to try to prevent it from happening again.

I felt like a pathetic mess. This is not me! What did I do wrong that all these bad things keep happening?! I don’t want to whine, but really???? Tara came up with a theory: June 30 is the last day of it all. It’s the end of the first half of the year. The first half may have sucked, but the second half will be all about recovery. Healing and good things for a change. And while chemo is not fun, it is part of the process and will lead to health. Ok, I’ll buy it. I’m ready for July 1 and all the good stuff!

In slightly better spirits due to only one more not-so-great day if Tara is correct, I got myself over to Ikea and met Tina, who, like any good mother, offered to kiss my boo boos if it would help, then to push me in the carriage when I was having trouble walking and, finally, a piggy back ride toward the end of the long store. I appreciated all of the offers, but declined. The pain worsened as the night went on, and it hurt to straighten and bend it. So, after a brief panic over if this would be the beginning of lymphedema and better safe than sorry, Nick and Tina convinced me to go to the ER. Yet another hospital adventure!

Over the several hours, first in the waiting room and then in our own curtain room, Tina and I amused ourselves people watching and eavesdropping. It was –  to quote one of the EMS guys – a busy trauma night for Boston. We also kept each other laughing and mused over the fact that every time we’re in the hospital together we end up in fits of giggles, which you never hear coming from behind any other curtains. They probably think we’re crazy. We are, but that’s ok.

By 2:30 a.m. we had the answer: radial head fracture – crack in my elbow. I got a sling, pain instructions and orders to make a date with an orthapedic doctor. How many doctors does one girl need?!?!

A Break

While waking up this morning was not fun – neither the hour nor finding out my hair was starting to come out in chunks – it was for a good reason: Vanessa brought our visiting friend Trish over. Trish used to work with us at National Grid, and the three of us were Charlie’s Angels. It was so nice just to walk and talk and eat and laugh and catch-up. As with all good friends, it was like no time had passed at all, although the last time I saw Trish was at the end of the road trip, when our visit was cut short because I found out my grandmother had passed away and I needed to get home. There is never enough time, and the morning flew by too quickly. Hopefully Charlie’s Angels will reunite again in the not too distant future – we need Nick to win the lottery so we can start our non-profit PR business that he said he’ll finance!

The Shave

Once Trish and Vanessa left, I took a quick nap and then awoke to realize I could put it off no longer: there was practically more hair on my clothes and bed than on my head. Time for it all to go. I walked down the street to Alton Barbers, giving myself a pep talk along the way. While I felt I had to do it alone, I had all of my friends’ and family’s comments running through my head: bald is beautiful, it’s cool for summer, it will grow back, you’re still a princess, hair is just a pain in the butt, you are beautiful, you have great eyes and an infectious smile, G.I. Amy, big sombreros, be bold, you won’t have to shave my legs… see, I do listen, despite what some people think! 😉

Alton’s was empty when I walked in, except for the woman behind the counter. When she asked if she could help me, I just said, “I need to cut it all off.” She asked if I meant a crew cut or shaved and I said shaved. Her eyes widened, she asked if I was sure and I told her yes, because it would all be gone in a matter of days anyway. She half smiled, nodded in understanding and yelled “Mike!!!!”

Mike appeared from the back, showed me to a chair and the nice woman explained for me. He motioned toward a chair, and I sat while he prepped. My one request: “Can I please not face the mirror?” And he quickly swiveled me around. No one spoke the entire time. And then, after he used the blow dryer to blow away all the stray hairs, I broke the silence by smiling and saying “I didn’t think that hair cut was going to end with a blow dry!” They both laughed and then started gushing about how I have a perfect head and how women’s heads are so much smaller than men’s, how cool it will be for summer and how great I look. I turned toward the mirror and laughed at my bald reflection – so strange!!! I put on my pink Dana-Farber Red Sox hat (they gave me a new one when I was there Thursday morning since the other was stolen), and walked back to my new home.

I am ok. I am better than I thought I would be. I know I’m probably going to panic when I need to get ready to go out to a nice dinner, when I go to work Monday, possibly later tonight and probably a million other times, but for right now, I am ok. And I know I will be. After all, you all keep telling me I’m strong and beautiful, so I must be. Thank you… And Tara, I hope your Second half of the year theory proves to be true!

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