Tag Archives: side effects of chemo

The More Things Change

An exhilarating and exhausting October is behind me – the first since recovery, and therefore the first fundraiser (and success!) the first big speaking opportunity, the first month of remembrance for fallen sisters, the first real Halloween in a long time

I had my first girl’s night out with soccer Moms, drank too much at Halloween – sorry if I was a little bit loud fellow trick or treaters!), listened to my 8 year old son read an entire page of Chinese characters.

I am almost numb with gratitude. I realize that I was so lucky to have found it when I did. To have the support I do, To have my children the age they are. To have my husband. My family. Money.

There are days where cancer doesn’t even enter into my thoughts for hours. Where I live as though it was time before. But then I have a hurt back and I wonder – is that bone pain or muscle pain? Or I get a comment about Dubai – weren’t you going there? from a Duke interviewee. Or I look in the mirror and realize my bangs are longer than my hair used to be.

There are always shadows and some people it would forever alter in a bad way.

For me, I am altered and I haven’t sorted good and bad yet.

I went to a Pink Ribbon Cowgirls luncheon last week and it was hard – to go back to that raw place where even sneezing the wrong way can get you sick. It was humbling because my patient navigator addressed the fact that so many people had recurrences in October: statistically there is a massively higher rate of recurrence in the first 3-5 years after NED (no evidence of disease). We still don’t know why.

There’s a danger to being almost smug when you hear each individual story – one woman had it come back with a vengeance after a lumpectomy (I’m so smart I had a mastectomy on both sides I would crow!)one person had ovarian cancer come back and I think I’m so glad I had gene testing so I knew whether to do that or not.

It’s both a sense of empathy and a sense of relief. Profound relief.

At the end of the day – more than relief. Joy. Happy healthy kids. Happy healthy me. Biggest (real) worry is getting everyone to school on time, doing the best I can at my amazing job, helping my friends when they need me.

Biggest perceived worry, though … that will forever be different after cancer.

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Recovering from Chemo – Purgatory in Patience

It is an odd thing, to no longer be going to the infusion room and oncology center. To have my hair actually growing long enough to get wet, and to have it be called “chic” by a friend – that was very kind. I also have good skin tone, a more natural gait. As if my body breathes a huge sigh of relief. But, the fatigue remains … and my emotions are rollercoaster worthy.

This weekend I gloried in the lazy river, catching kiddos off the water slide, playing with underground antics. But the walk to and from our room was as long as our block, so my bones were weary and my muscles weak. I slept most days in the afternoon, but made lunch and dinner with the crew. And, caffeine no longer seemed to help.

I have a different perspective now on a vacation. The challenges of vacations before – how I looked in my swimsuit, riding the revolving kiddo emotions, helping everyone to bed in a different configuration every night – somehow didn’t matter as much because I was there. I could float, I could kiss them goodnight, and I appreciate that now.

That’s not to say I’m not short tempered or have my moments, but they are fewer than before and that will be a great gift. I am more zen, less planned.

Of course, life would not leave me with just that lesson – Emmy got sick on the trip so my planned week of camps and rest has turned into dr’s visits and Shaun the Sheep marathons. And, group nap session this afternoon.

Once again, planning doesn’t work when you have this many variables so we are back to one day at a time. It’s probably better this way because I am starting to think about surgery next week and the more I think about it, the more I worry so now I have less time to worry …

I am going to enjoy a nap sleeping on my stomach – a luxury I will not be able to afford again for a while after next Thursday. Carpe diem. Or “nappe” diem …

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Cancer Bugs Killed – Now what?

I don’t even know how to start this blog. I should be celebrating in the remarkable achievement of my chemo regime – according to a surgeon yesterday, my cancer has been “resolved” – as if it was a puzzle whose pieces fell into place and then disappeared. But, the matter of the next step has not been resolved – in fact, I am learning that there is an art and a science to even science.

I know that there are grey areas in life, but I am not good at living in them. This past year has been one grey area after another and at least with cancer I thought – black – target – achieve. Well, turns out that while chemo is black and white, and there is a standard of care, what comes next is almost a matter of personal choice. This seems ludicrously heinous after what I have been through and has made me more angry that I have been since learning this damn disease was taking over.

Here’s the issue – there are different schools of thought on what I do next. I had invasive carcinoma (read cancer) but because I had the giant reaction to the needle biospy, it is difficult to tell the original size of the “tumor” – probably around 2.7cm. I had an area of unusual tissue that was larger and that’s where the trouble comes into play. And, since I didn’t have a biopsy of my lymph node – and it is now normal – it is unclear if the cancer had actually spread.

There is agreement that I need surgery from the four surgeons I have seen. There is agreement that I need to take out the area where the cancer was (in case any cells might still be wandering around dazed and confused) but not on how to take them.

One doctor says I need more imaging, another mammogram, and potentially will only need a lumpectomy with radiation. One doctor says I should have the mastectomy on that side, followed by radiation, and then reconstruct at a later date. One doctor says I should have the mastectomy and it’s OK to begin reconstruction before radiation. And, one doctor says I can have a mastectomy but probably don’t need radiation.

This is the research project of my life. Everyone who knows me knows I want details and information, but I also have had implicit trust in the medical system. Until now. I understand that people can have different perspectives based on personal experience, but it’s difficult for me to understand that could exist on a stage of this magnitude.

Consider this: radiation has been shown to decrease the chance that cancer will come back BUT it also brings with it the side effects of issues with healing, reconstruction and additional cancer down the road. http://www.breastcancer.org/treatment/radiation/new_research/20120309.jsp

Here’s another: Benefits of radiation after mastectomy unclear: http://www.breastcancer.org/treatment/radiation/new_research/20100306b.jsp

But, here, a study shows that radiation may help if you are young: http://www.breastcancer.org/treatment/radiation/new_research/20111009.jsp

And, having a double mastectomy decreases my chances of having breast cancer recur but does not eliminate it. It all comes down to that lymph node. If it had cancer, I maybe should have radiation. If it did not, I shouldn’t. But they might not know that UNTIL my surgery.

I have scheduled  interviews, information gathering, and appointments over the next week to wade through this mess and determine the best course of treatment. Ironically, I will likely be making the decision of which doctors to use based on what I want to have done. Not them. And, I am learning, I am not alone in this – of my survivor friends over half had a similar issue at the end of chemo … The time when we should be celebrating the end of a  supremely dark period in our lives given over instead to complete anxiety about a decision that arguably should not be ours to make.

I am angry that this is my decision to make and that it is taking me away from my celebration. Dammit Jim, I’m a breast cancer patient not a doctor.

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Feeling Better than “Normal” on Chemo

I had a wonderful weekend with friends – two ladies who have not only been by my side this whole process, but friends since seventh grade. While dishing on middle school fashion and our penchance for the Jessica McClintock and Esprit outlets (along with keds and two pairs of socks) we talked about the last year. I realized – with their help – that in an odd way, I feel better now than I did a year ago at this time. My body feels better, I feel like I have more concentration power, more laughing capability, and even more energy (mentally at least!).

We all know that our bodies try and tell us when there is something wrong, but like a child or pet, we can’t always decipher it. I was in that cycle – throwing drugs, exercise, diet, accupuncture at my fatigue with little success. I should have known there was something bigger afoot. But life is what it is and I kept plowing ahead.

I have lots of time to think these days and I have examined last fall in great detail. I was napping virtually every day – Davis out of town – managing the chaos of our household and part time work – and I was at the end of my rope. When the Dubai decision came into our house I approached it as a threat – to what little sanity I had left, to our precarious balance, and probably to my core.

These days I am tired in the afternoons and have days where my fingers get tingly but I am productive again – and in a way that I wasn’t last fall. One of these good friends from this past weekend described it poetically. My eyes are “shining again.” I don’t know about that (maybe my lack of hair is confusing her vision – ha!

Isn’t it amazing that it took cancer to get me to feel better? But it was cancer that was making me feel bad. Now my body is in some strange way rejoicing that I am beating the true invader. And I feel better on chemo than I did last fall. Imagine how I might feel cancer free.

 

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Bruised Not Broken: Another chemo side effect

This last week I had a pimple on the back of my ear or something like that. I picked it – no big deal. Two minutes later (how often do you look at the back of your ear?) Davis said ” look at your ear!” And I said, “I don’t look at my ear.” And he said “You better it’s bleeding crazy.” And I said “No way, I just had a little – AHHHHHHHH” (This last part as I realized I was dripping blood onto to my shorts.

Thirty minutes later it had stopped. I thought nothing of it because it was was merely a blip in the cacophony of strangeness of the last few months. But I sat with a survivor friend and she said how afraid she had been to get a pedicure during chemo. “Why?” I said “Well, because you bleed so much.”she said.

No one has mentioned this to me. Not once during all the conversations about chemo side effects or treatment or anything. But it makes sense – if my addled swiss cheese brain could remember the science classes. Warning, science content: Platelets (which I am seriously low on because of my chemo) cause your blood to clot. They stick to each other and make a barrier – inside or out. So a nick on the surface becomes a giant bleeding wound, and one under the surface becomes a beautiful water color in purple, green and yellow.

Yesterday, I had a fit of activity hanging art work in the kids newly colored rooms – and yes, Emmy’s room is VERY pink. And, our room is very blue – Honest Blue (which my friend pointed out is better than Lying Blue but I’m a little worried it’s too close to Carolina Blue.)

Anyway, I knocked my toe on some of the painter’s gear. It was the same toe I broke last summer. Yes, I broke my toe by knocking it on a door. Apparently it’s really hard to break your toe like I did – the doctor took a picture because it was sticking out 90 degrees. But I digress. I knocked the same toe and it hurt. A lot.

But, the bruising is intensely awful. My toe looks like I used it as a punching bag. A very small punching bag (it is my pinkie) but still.

Now I do the internet search and find out bleeding and bruising are very common. Because of the platelets. So I’m supposed to do things differently. Breastcancer.org  makes the following suggestions: avoid sharp tools and objects until your platelet count comes back up. Use a very soft toothbrush, avoid forcefully blowing your nose, use an electric shaver instead of a razor, and avoid contact sports or other activities that may cause injury.

Good thing I didn’t have the energy to play soccer with the kids – I could have been a walking purple martian. And, I may have to relearn how to blow my nose! Thankfully I haven’t had an excuse for shaving often. But last week I was running around with scissors.

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