One bad chemo left. Will I get radiation?

RadioactiveSymbolTime sure does fly when you’re not having much fun. I can’t believe that I only have one bad chemo treatment left, February 10. It’s going to be the end of a chapter in the Cancer Book for me.

But my story doesn’t end there, that’s for sure. Everything has changed and my post-chemo life will begin to show itself. I will still have nine more months of Herceptin, a targeted chemotherapy, but it will be nothing compared to how six rounds of Carboplatin and Taxotere have wreaked complete havoc on my body.

I’m meeting with a Radiation Oncologist next week, and I have to admit I am hesitant to get radiation. I just got my ass kicked from chemo; I’m not too willing to rush into radiation. The kitchen sink seems to get thrown at cancer, but in some cases there’s not enough information out there to tell us what really works and what doesn’t.

I had two positive lymph nodes which is a gray area for radiation. Long-term radiation studies have focused on people with four positive nodes or more. I’ve also done a lot of research on radiation therapy and found out that, yes, radiation can kick your ass in, too. It can fatigue you, burn your skin, change the texture of your skin, cause skin pigment changes, increase your risk of lymphedema (swelling), cause a secondary cancer, increase risk of heart and lung damage (especially if it’s on the left side, which mine would be), and you can only treat an area once time in your lifetime.

I feel like my left side is already severely compromised. I can’t feel most of it, and there is a lot of scar tissue that has been changing and evolving since the mastectomy. I am still getting to know this part of my body again. At my check up this week my breast surgeon told me the actual scar tissue on my chest is the size of a dinner plate, because that’s what was left gaping open when the breast tissue was removed before the skin was pulled together. So what looks like a ten-inch line scar is actually a ten-inches in diameter round area of scar tissue. That’s huge, and it’s still healing.

So far each doctor has deferred to the next. The Breast Diagnostic Doctor: Whatever the surgeon days, do. The Breast Surgeon: Whatever the oncologist says, do. The Oncologist: Whatever the radiation oncologist says, do. I don’t know, my gut says don’t. And who knows, maybe the Radiation Oncologist will see no need to treat it.

All I know is that if radiation is recommended, it is going to be a hard sell. Since the Herceptin is supposed to be a nail in this cancer’s coffin, I’m going to need to see some serious data showing that the benefits of radiation will outweigh the side effects.

 

 

 

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Creativity and cancer

I have epiphanies all the time. Most days I have at least one exclamation of, “I have an idea!” or “I need to….”  This morning’s epiphany was pretty simple, but quite loud, actually it was booming so I paid close attention. It was this: I need to get better at the things I am already good at. I need to immerse myself in three of my favorite things: woodworking, cooking, and music.

Each of these three activities feeds me in a different way, but the one thing that ties them together is creativity, which is a daily requirement in my life. My daily dose of vitamin C.

Time moves differently with cancer. The glaring fact that we are all time-limited is magnified. Mortality is real and sometimes there is no rhyme or reason to when you die and how you die. But the fact remains: we’re all going to die. So how do I want to spend my time? I want to be in a constant state of learning and sharing what I’ve learned. Leisure time really isn’t for me; it never has been. Most people’s bucket lists include traveling somewhere exotic and drinking expensive champagne. This week I want to master a hand-cut dovetail joint, learn Japanese scales, and make miso from scratch. This week. Next week, something new.

My morning epiphany wouldn’t have come on so strongly had it not been for cancer. Am I starting to appreciate the role cancer is playing in my life??? I’m not sure. But I do know that I’m listening more closely to everything now.

 

My relationship with cancer

Lucky doesn’t begin to describe how I feel about my relationship with Amelia. We’ve been together for 20 years. We met at a yoga center where I was working, and Amelia – who was a vegetarian, non-drinking straight woman – was “finding herself.” I’ve always said that one day she was touching her toes, and then she found me, meat, and bourbon. -Insert my laughter here-

We’ve survived something most couples don’t: Owning restaurant business together. Having a business together catapulted our relationship to a whole new level. It took a while to navigate, but we’re awesome at it. We are a machine. (Here’s a tip for any of you who wonder if you could do the same: You both need to excel at different things and you need to accept those strengths and not be a pissy-pant because you think the other person has it easy. Trust me, no one has it easy. And you can’t be a control freak.)

So now here Amelia and I are dealing with cancer. Cancer is the most self-centered thing that has ever happened to me. It’s all about me and my cancer most of the time. But in reality, it’s not just about me. It’s also about Amelia, my caregiver, my Love. Sharing your relationship with cancer sucks. It is a physical and emotional strain day in and day out. It doesn’t go away. We don’t forget about it. It’s not like just having a bad day. This is forever.

I won’t go too much into the details of HER2 positive breast cancer, but there is a chance the cancer will show up again in my lifetime either at the same site (local recurrence) or a metastasis (a distant recurrence). The longer it takes to come back, the better because maybe there will be a better treatment developed in the coming years.

Then again, the cancer may never come back. It could be completely gone and we may never have to go through this again. That what I believe 80% of the time, but when I’m in the 20% place I’m obsessive and gloomy. It’s not a good place. I think over time that 80% optimism will increase until, as one good friend of mine put it, one day I will go through a whole day without thinking about cancer, my mastectomy, or chemo.

I know this: if the cancer does recur, Amelia and I will deal with it, and it will be hard. But our love transcends time, difficulty, grief, and everything in between. Love is my motivation.

 

 

I don’t do Resolutions

Amount of New Years resolutions I’ve ever made: zero. It’s not my thing, never has been. I’m hard to keep up with (ask Amelia). I am constantly moving. I see possibility and go after it, think something and do it, dream something and make it happen. I am a walking resolution. I resolve to get shit done all the time, cancer or not, depression or not, financial instability or not.

Because I’m constantly changing, I am often a ball of contradictions. I love change; it’s a constant, and it’s happening right now. How I feel and think today could change tomorrow because if I’m rigid I am not open to possibility.

With cancer there is no room for rigidity. You are forced to go with the cancer flow. Monday I worked my butt off for eight hours installing heat ducts, patching a floor and removing a tub; tomorrow I may cry half the day (while working).

Crying is a pain in the ass. It gets in the way of work for me. It makes me stop and feel something I’d rather not feel. It’s as inconvenient as cancer. I was not much of a cryer before cancer, but now I cry more frequently, though unpredictably. Yesterday I was working on heat ducts in the basement and I found myself crouched down with my head in my hands, weeping. One of those I have cancer, when is this going to stop moments.

The alternative to crying is anger with a side of resentment, and nothing good comes out of either of those things.

Lesson of the week: crying is good. If I did have a 2016 resolution, it would be to feel more ok about a good cry.

 

This is the chemo diet

Chemo has killed most of my tastebuds, literally. They’re all but gone. A few sense a hint of salt, a couple increase sour by 1000%, and the rest pick up every bitter flavor known to humans. My mouth feels coated, and for lack of a better word, hairy. The tip of my tongue is numb, like it was burned sipping a scorching hot cup of coffee.

When I realized that all I could really taste was bitter, I sampled all the spices in our cupboard: allspice, basil, cardamom, cayenne, cinnamon, black pepper, garlic, cloves, mustard, paprika, sage, thyme, ginger, coriander, fennel, salt. What I learned was that most spices are bitter, really bitter. Sage was the worst (once one of my favorites), and garlic and black pepper were almost as bad. Surprisingly, cinnamon is one of my new faves (it’s really good mixed in with black beans, btw). And salt is my new best friend.

Regarding foods, I now prefer plain and white. It’s very unlike me to want to eat white foods, but during chemo you eat what you need to eat. Malnourishment is a very common issue during chemo. You have to find what foods work for you and stick to them. For me, it’s mashed potatoes, oatmeal, eggs, corn, white gravy, bread, broth, chicken, pasta with butter, yogurt, soft cheese, white beans, white sugar, and for an attempt at a little flavor, caramelized onions.

There is no joy in eating when everything tastes bitter or like nothing at all. Today I drank a Coke and it tasted like mildew to me. I tried to eat a piece of sourdough bread, and it was like I bit into a lemon peel: intense  and revoltingly sour.

This is where mind over matter can help. I keep reminding myself that food tastes good, and I try to override my brain which is screaming at me to stop eating. And it works, to an extent.

I cannot wait for chemo to be over so I can once again enjoy pickles, hot sauce, sausage, squash, stinky cheese, citrus, champagne, or as Amelia says, everything but stew. I love food. Except stew.

Conclusion: Life is pretty damn boring without tastebuds.

 

The is not the chemo diet

Chemo fries fast-growing cells all over your body: the lining of the mouth, gut and respiratory tract, bone marrow, hair, nails, and skin. All of these things take a serious hit – my bald head can tell you that. There are a lot of things that I’ve done to try to minimize chemo’s effects.

The one thing I don’t do is take any supplements or vitamins without checking with my doctors. You don’t take antioxidants that help repair cells when you’re trying to kill cells, you don’t take things that are processed by your liver when your liver is already taxed, and you don’t take things to try to boost your immune system when it could also boost cancer cell growth.

From day one I read everything I could get my hands on, scouring for information, for answers. Folic acid, vitamin A, vitamin E, vitamin C, milk thistle, green tea extract, mushrooms, antioxidants, garlic, alpha lipoic acid, marijuana. The first few weeks I’d go in with endless questions for my oncologist, “Have you heard about this? Does this help? Can I take this?” It was a resounding “NO” every time. I finally got it, stopped searching for the magic bullet, and let the chemo do its nasty work.

Chemo is quite a ride, and you can’t get off until it is over. You have to hunker down for 18 weeks (or more or less, depending on your regimen), endure it, learn from it, grow from it (not the cancer though – it can die) and begin rebuilding when it’s over. After chemo, that is the important time. That is when the real recovery begins.

Scar tissue

The ultrasound was clear yesterday! Woo! The doctor at the Wende Breast Clinic said it is scar tissue. One less thing to worry about.

In case you didn’t read my previous post, last week Dr. S (my oncologist) bugged her eyes out of her head when she felt what she thought were lumps above my mastectomy scar. She announced in her all-business Romanian accent, “These should not be here! I am ordering an ultrasound immediately!” Amelia and I were on edge to say the least. Let’s face it, we all write stories, usually bad ones.

After the appointment with Dr. S, Amelia and I talked about how my breast surgeon, Dr. Y, would probably have reacted differently. He would probably say in his chastising Jewish accent, Look, that area is going to change. It’s totally fine. Stop worrying. Are you stretching? Show me how high your arm can go. 

It’s good Dr. S wanted it checked out even if it was a false alarm. This is a time when if anything feels not quite right, you get it checked. This is not a time to ignore the little things; it’s a time for hyper vigilance.