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Archive for the ‘Planning’ Category

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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As mom, Tina and I walked out of Dana-Farber today, we were all unusually quiet. “I feel … beat up,” I finally said. We all looked up at each other and got small, weary smiles on our faces; looking at them, I could see they felt just as drained as I did.

I know this hasn’t been easy on any of my family and friends. It’s been a nightmare for us all. And just the thought of it being extended is wearing on us all…

Today was week 11 of Taxol, week 23 of chemo. Next week will be my last chemo session. I should be excited. But I’m not. I can’t be. Not yet. Not until after tomorrow’s discussion with the radiation oncologist. Because we may not be done yet.

Mom and Tina debated this with me at chemo today. “We have to celebrate,” mom said. No, it may not be the end. “But even if you have radiation, you’ll be done with chemo and we should celebrate that,” tried Tina. Tara and Kristen brought up the same thing this weekend. “We need to have a post-chemo party!” But no. If I have radiation Monday through Friday for six weeks, in my mind, there is nothing to celebrate. At least not until that is over.

So we’ll see what tomorrow brings.

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Tina brought tea from Dunkin’ Donuts – highlight of the chemo infusion!

Today, chemo week five at Dana-Farber, was fairly routine. Not much nausea, not much pain at the infusion site by my wrist, and mom and Tina were there for my amusement – and I for theirs. It was a blood work and infusion only week, but my doctor stopped in to visit anyway.

Yesterday for the first time I admitted to one of my friends how I am really feeling and what is happening  – and felt so bad when she started crying.  I even admitted, as I did with Phil when I told him that I am listening to him and not going to attempt to do the Newport Half Marathon, that I am not invincible. I need others to know because they rely on me and we need to be prepared. If it was just all about me, I’d stay in denial as long as possible!

You’re probably wondering what the heck is happening. No, I am not dying, and I don’t have another lump. Things are simply getting worse. I honestly hate saying (or writing) it because that makes it real, harder to deny and could make people feel bad for me. I hate it when people feel bad for me or baby me!!! I just want to be treated completely normally, just with understanding of my limitations so people aren’t counting on me for more than I can physically give.

It’s really interesting, and somewhat ironic. I find it amazing that officially I no longer have cancer, but things are worse from the treatments than I ever felt when the cancer was in my body. Looking at me, you’d say “she has cancer” but I don’t actually – now I’m a cancer survivor. Just still in treatment so I look like crap. And while some things are starting to get better, other side effects are kicking in…

Better

  • My hair is starting to grow in. Really! And not just on my head – I have to shave my legs! I will never complain about that again… My doctor confirmed that it sure appears to be coming back and that it can happen while on Taxol, but isn’t normal so she doesn’t mention it as she doesn’t like to give false hope.
  • It appears my eyelashes and eyebrows are no longer falling out – so while they are sparse, it would be so fabulous to preserve what I have and for them to start to grow back too.
  • I was able to cut back to a normal dose of benedryl starting today, and starting next week can start to cut back on the steroids slowly, as I haven’t been having any of the real bad Taxol reactions. So that means I shouldn’t keep gaining weight, and I won’t be as hungry all the time – thank goodness ’cause I hate all the weight I’ve put on, and am ready to get back into my smaller jeans…
  • Being able to work four days a week, unlike the A/C cocktail.

Getting worse

  • My fingernails are starting to go. They are increasingly brittle, have lines I try to cover with light nail polish and four have broken off below the skin, complete with bleeding – so not fun…
  • The aches and pains throughout my body are increasing, as are the hand and feet tingling. And it will continue to increase each week.
  • My liver is elevated – at first we thought it was because I had a drink and took tylenol, but I cut both out this week and it’s elevated again. Now the thought is that it could be too much ibuprofen because I’ve been taking a bunch for the abovementioned aches and pains. So I’m afraid I am going back on pain killers so I can cut down on the ibuprofen – but will only take them at night when I have no where to go, as I am not supposed to drive or work – it makes my head fuzzy, which I hate! Will take only when absolutely necessary…
  • So I know I have to face that I may not last four days a week at work the entire rest of the time.

It’s all relative, right? It’s only seven more weeks. And no matter how bad it gets, I can get through/handle anything for just seven weeks. And then I will get better. And have a fabulous 2013, and hopefully rest of my life. And until then, at least my hair is starting to grow back – and it’s brown, thank goodness! 😉

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