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Posts Tagged ‘mastectomy’

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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“Doesn’t your body know you’re done? Can’t it just be back to normal?” Tara and I mulled over how wonderful this would be as I laid on the couch following my nap. To just snap my fingers and be normal me again. Week 24 of chemo, week 12 of Taxol: done. Only it’s not the end I hoped for.

I know everyone wants me to be excited and to celebrate but I honestly don’t feel it at all. (Although I loved the congratulations card Tina gave me from my Goddaughters, including the Thanksgiving picture eight-year-old Nadia drew me that said “p.s. One thing I am thankful for is that you don’t have Taxol!”)

My body aches more than ever, the tingling and numbness in my feet and fingers has steadily increased and now I have phlebitis in my right arm. So in addition to starting radiation, I am heading back to physical therapy, too. Doesn’t seem like an end to me. I really wish I could be happy, but I’m not.

I did, though, appreciate how the nurse practitioner put it to me today. She said, “It’s just like you’re in a triathlon. You’ve made it through two huge parts: the surgery and the chemo. Now for the third part: radiation.” I liked the sound of that, but also can’t help thinking that it’s even more than that – then there is the implant surgery, which now won’t be until summer, then the two follow-up procedures to that, which brings us near the end of 2013. Then the five years of tamoxifen. As I said last time, it’s the never-ending saga. I need to just suck it up, accept it and stop whining about it – I’m getting sick of myself! And I will, I just have to get back on my feet and then I will start to feel better.

I think I just keep feeling like every time I take two steps forward, it’s followed by one step back. Like the pain that’s been growing in my arm the last couple weeks today turns out to be phlebitis and so I now need to add PT back into my regimen. At least it’s coinciding with being able to take ibuprofen again, now that the chemo is over! And then I was excited because I signed up for the Jingle Bell Run in mid-December thinking ‘Of course I can be running again a month after chemo!’ I didn’t realize how bad my feet and legs would get – and today the nurse said it probably won’t go away for a month, maybe more. So yet another race I paid for but won’t be able to run. (Note to self: no more signing up for races until I am actually fully back to running!!!)

I know I need to give my body time to rest and heal. I just get so impatient with it and simply want to be normal again. And look half as good as Giuliana Rancic.

Giuliana and Bill were on Katie today, as I was dozing on the couch. My ears perked up as I heard them start to talk about her breast cancer. I knew she had, like me, a double mastectomy. But, even though they said she had an aggressive form of breast cancer, instead of chemo and radiation she opted to go straight to the five years of tamoxifen. I don’t get it: why and how??? That certainly wasn’t presented to me, I thought as I looked at her beaming at me from the TV, looking so beautiful with her long dark hair. (Yes, that is jealousy you sense.) I just don’t get it – how can you go through that major surgery and not do the other things to lessen your chance of recurrence? I know it’s a personal choice, but I guess I never felt like there was really much of a ‘choice’ at all.

Jealousy will get you nowhere – and it’s not like I lost my hair so Giuliana could keep hers. And hey, my hair is starting to grow back – it almost covers my head, so soon I won’t look like a middle-age balding man anymore. The aches, pains, numbness and tingling will go away. I will be able to run again. I will lose all the weight I gained. Yes, radiation will have its own challenges, but they will be less than the chemo. If I made it through 24 weeks of that, I can make it through 25 sessions of this. And then I’ll be that much closer to the finish line… and maybe then I’ll feel like celebrating.

Update, 9 a.m., Nov. 21: It’s amazing what a good night’s sleep can do! I woke up with a new perspective and felt the need to update this post. As I just posted on Facebook, “Today I am thankful for mornings where you wake up with a new perspective! I feel better – more energized, determined and like my old self. Crappy cancer can’t change me!”

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I can be very stubborn. (I can hear the laughs and see the nods of agreement!) But I will listen, particularly when someone is using terms like “survival rate,” and it’s hard to argue with statistics.

Mom and I both went into this morning’s meeting with the radiation oncologists at Dana-Farber inclined to “just say no.” I was fairly sure I knew what the rates they’d quote would be, based on our initial discussion many months ago. What I didn’t realize was how much things changed when my specific details were factored in post-surgery. Everything from (you guessed it) my “young” age and the size of my tumor to the fact that it had spread to my lymph nodes and there was lymphovascular invasion (LVI) influence the recommended treatment.

So what convinced me? The numbers. The fact that right now my chance of recurrence is approximately 15% and by doing the radiation it brings down the chance of recurrence to 5-7% . That’s a lot more than the 3% improvement I was expecting. I can say no to a 3% improvement – but 7-10%? Even as much as I want this all to just be done, I can’t ignore that.

Tuesday is my last chemo session. But it’s not the end I wanted. It’s like the end of the last chemo session – it’s just the conclusion of another chapter in this never-ending saga. In the next week I will have to go to Dr. H and have him partially deflate my left tissue expander so it won’t get in the way of the radiation. Then the Thursday after Thanksgiving I’ll go in for the radiation planning session where they’ll tattoo marks on me to make sure they radiate the right area each day.

Yes, each day. Monday through Friday for five weeks – 25 sessions. Luckily they will only be a few minutes each time, so I will be able to continue to work through it. The biggest side effects are continued fatigue, redness and soreness. And, since my lymph nodes were removed, the increased risk that the radiation could trigger lymphedema. (I will be praying about that one – really don’t want that!)

And the biggest bummer of it all for me? Postponing the surgery I was supposed to have on January 2. I thought I’d start 2013 with surgery and pretty much be done, but now I’ll be doing radiation and have to wait six more months to switch out the tissue expanders for implants. Then a few months after that will be the nipple surgery and then a few months after that will be the tattooing. Oh – and then the five years of tamoxifen. It really is the never-ending saga…

But it’s worth it. To do everything I can to be cancer free. To fight every step of the way. To not have to look back and wonder, “if only I…” because I have, in fact, done everything within my power to get rid of it and prevent it from coming back. So I can continue to wake up each morning, breathe in and breathe out, and thank God for another day.

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