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Posts Tagged ‘radiology’

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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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?

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My first radiation was fairly uneventful, which I consider a very good thing. I’m praying the next 24 will be just as anti-climactic. But what I observed while at Dana-Farber made me happy. I saw a woman who (apologies for judging a book by its cover) appeared to not be very well off be given a small tube of lotion that I paid $25 for without blinking. You could tell by watching and a bit of eavesdropping that she was incredibly thankful. I don’t know, maybe her insurance paid for it, maybe someone else, who knows – but what I do know is that Dana-Farber makes sure you have what you need, whether you can afford it or not.

So what do I want for Christmas? Well, to be honest, my first wish is for it to be last February, turning 38, with long brown hair, 25 pounds lighter, feeling like I’m on top of the world and ignorant of most things cancer. But since I don’t have a magic wand or fairy Godmother, that would be a waste of a wish. And I hate wasting something as special as a wish. This is what I want for Christmas:

I honestly don’t want anything more than this for Christmas. So if you insist on getting me something, please have it be a card saying you made a donation to support something like this – or wherever you want to help those who really need it. And if there isn’t something specific you want to contribute to, fundraising continues for the 2012 Boston Marathon Jimmy Fund Walk until December 31, so even if you already sponsored me, you’re welcome to do so again (I promise this will be the last time I solicit support for the 2012 walk… 😉 ) or visit my brand new Jimmy Fund donation page here. Seriously, supporting the place that has made this horrid year a little bit easier is my only Christmas wish. I can’t help thinking the same thing I thought last year when I was making donations for presents in honor of Mirany (and you can donate in her honor here) – what could we possibly need more than our health?

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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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I know I’m not going to do this entry justice – there was just so much to learn and absorb on my first day at Dana Farber! So I’ll try to share, but please know that medical stuff is not my forte! I never wanted anything to do with the medical field (left that to my mom, Mark, Heather, Tina, Tara, Steven, etc.) and still would rather not. But now I don’t have a choice. Ugh. Bottom line: this certainly is not that medically accurate, rather my interpretation and transcription of the notes I took throughout the day…

Tuesday, March 27: Five doctors in eight hours. And barely a minute to breathe (or eat) between sessions. You really should be given a certificate or something after to show you made it through the day! Luckily, many of them said the same thing, just in a different way, so that by the end of the day we thought we pretty much got it – at least mom and Mark did. I was (am) still in shock. (Not quite sure that will ever really go away.) But I have to say – they were pretty much all great (with a minor exception that I’ll get into in a later entry) and I really appreciated being able to see them all in one day. I’d much rather jump in then drag this out!

We saw:

  • Breast surgeon
  • Medical oncologist
  • Genetic counselor
  • Radiation oncologist
  • Reconstructive plastic surgeon

I don’t think I’ve ever undressed, got examined and redressed so many times in such a short span of time. Luckily it was one thing I anticipated so I dressed for it and was down to less than a minute by the end (although to be honest we didn’t time it but I’m pretty sure). For the most part (other than the genetic counselor), it was: say hello, undress, examine me, get dressed, talk about my situation, draw a picture (doc- not me, thank goodness as I’d fail that test), explain options, ask questions and leave me to mull over my options on the way to see the next doc. (At least the reconstructive surgeon threw in a video, too – but no popcorn.)

So basically:

  • Invasive ductal carcinoma in two places in my right breast
  • Grade 1 – slow growing on the aggressive scale
  • Stage 2A – size (because one of them is more than 2 centimeters. One is about 2.3 centemeters and one is 1/2 centimeter)
  • They won’t know if it’s spread until they do surgery and get into my lymph nodes (breast cancer tends to like liver and bones)
  • My cancer may not react to chemo – sent away for a test to see for sure. So I may get to keep my hair, which would be a plus. And I’ve heard how horrid it is; it would be a blessing to be spared of at least that…
  • Strong positive for estrogen and progesterone so will need to be on antihormone therapy for five years after – so no chance of any more children until I’m at least 43. (I hope none of you keeled over hearing that statement from me. I know I’ve pretty much said I was done but I don’t like my options being taken away!)

Options are:

  • Lumpectomy where they will cut both masses out, as well as some around it to be sure they got it all. Day surgery with about two weeks recovery time.  Then radiation every day Monday through Friday for six weeks. You can’t have any reconstructive or plastic surgery with this one. (No spackle to fill in the hole, as the doctor said one patient asked.) So there will just be a big dent/hole, and the radiation will shrink my breast, too.  The chance of it coming back ranges somewhere between 6 and 10% depending whose stats you go with. Could do this in a week or two.
  • Mastectomy where they will take the entire breast and build me a new one. (Multiple types of reconstructions – another decision to be made if this is the winner.) About five days in the hospital, with 5-6 weeks recovery time. May be able to get away with no chemo or radiation. Approximately 3% chance it could come back. (Better odds but not as much of a clear winner as I’d heard.) Could do in three or so weeks.

Then there’s the genetics stuff. The question is, why did I get breast cancer when I’m ‘so young’ (at least for this) and no close family history (my mom’s cousins only)? So there’s a chance I could have what some call the breast cancer gene. BRCA1 or 2. Basically, if I have it, I should have a double mastectomy because there’s more than 50% chance I’ll get it in my left breast too. And up to 40% chance I’ll get ovarian cancer (oh yay). And worst of all, a good chance my future granddaughters or nieces will have the same gene. (I can’t even think of that.) So the test has been ordered and we should find out by the end of next week or so. (It takes up to 14 days at some place in Utah.)

So much to think about. I was completely fried at the end of the day, as were mom and Mark, although they seemed to be in better shape than me. They dropped me off, I called dad and Maggie so they wouldn’t worry, and then I went to dinner with Tina and Mike so I could explain it all to both of them at once rather than rehashing multiple times. That definitely helped because they got me out of the bitchy mood I was falling into as I really hated my options. They made me smile and laugh and somewhat forget about things for a while – and then when we did get into it, they asked the right questions, made me think and even convinced me it would be ok no matter what I choose…

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