Cancer

Mother’s Day has many meanings

Happy Mother’s day to all the mothers out there who are fighting the good fight.

That could mean so many things really. The obvious of course … a wish for those of us who are fighting cancer and struggling to be good moms every day while remaining brave and positive for our children.

It could also be meant for all those women out there who lift us up and help us be better — be stronger — moms. Or for the women out there who are praying for us when we cannot pray for ourselves. It is all these selfless women I stand with today.

Tomorrow, when we rush off to work or run to the gym, stop and say hello to the stranger we see every day during your morning commute. Reach out to our neighbors because they are reaching out to us. We never know how a kind smile or a warm hello could change someone’s day. Remember our bad days and smile. Isn’t that what Real Mothers do? Don’t we usually feel warm with memories of a mother’s touch or kind smile. Just think of the power we have as women. We are so remarkable.

I know one thing, I will live a lot longer if I smile than if I don’t.

Is it just my imagination? I need to know now

Imagination is a funny thing. As a parent, I’ve loved watching my children at their various stages of development using their imagination in the most remarkable ways. Imagining they are fighting dragons with swords or hosting tea parties filled with impressive people. And as they grow, their imagination grows with them. Imagining they will score the winning goal on the soccer field and be carried off to the roar of the crowd, or playing piano for kings and queens. How marvelous!!!

But for me, not so much. Lately my imagination has been running wild with scenarios no one should have to imagine. A couple of weeks ago, I got a bad PET scan. Not a good thing for a stage 4 cancer patient. Of course, the doctors want to put me through stages of grueling tests to rule out this and that, but I already know. … Or do I? Is it my imagination running wild or is the cancer really back?

I am a fighter not willing to sit around and wait for them to take more tests and compare this to that, so I must find the truth quickly. I don’t have the luxury that children do to allow my imagination to run wild. I must push my doctors to upturn every stone. I need to know what I’m up against.

I realize this is probably not a good thing, but I am in battle mode now. I have my sword out, and the fighting begins again.

Weighty Issues


I decided to go to a cancer dietitian. I’ve been so confused about what are the right foods to eat and what aren’t. Take milk, for example. For the past year, I’ve been drinking soy milk because I was told cow’s milk and dairy products aren’t good for cancer patients. Then I find out that soy milk is loaded with estrogen, which doesn’t seem like such a good thing for someone whose breast cancer is estrogen-driven. So I went to the specialist and really learned a lot.

The first thing I learned was that, yes, soy does have estrogen … but it’s still better then cow’s milk and there’s not enough estrogen in it to really be harmful to me.  But, if I’m still worried, almond milk makes a nice alternative.

And, I wanted to know, just how important is it to eat organic? I mean, I want to eat what’s good for me, but I don’t want to go broke. Here’s what the dietician’s advice basically comes down to:

  • Spend your money on organic, grass-fed chicken and turkey (corn has lots of hormones that are bad for cancer patients). Wild-caught fish is worth it, too.
  • Save your money on vegetables and fruit by buying only in-season and locally grown. When you stick to the stuff grown close to home, she said, there’s no compelling reason to buy organic. It’s less costly and more healthy. The reason you want to stay away from out-of-season produce — even if it’s labeled organic — is because chances are it’s from out of the country and you never know what “organic” means on produce grown outside the United States.
  • Eating nutrients from your own environment is good for you. Organic, locally grown honey, for example, has properties that are best for the people living in the region it’s made in.

The dietician explained to me that all the major chemo and radiation I went through (different from the maintenance chemo I’m currently on) killed all the cancer cells, and now the idea is to replace those cells with healthy cells. The more healthy cells I have, the better my immune system is and the stronger I can be for future fights against those nasty cancer cells. (That’s life with Stage 4 cancer: always shoring up for the next big battle.)

It was interesting learning about the different foods and what they can do for the body. Carrots, yams, tomatoes, garlic and flax seed oil are highly recommended because each has properties that are particularly helpful to breast cancer patients. Processed foods are highly discouraged. Anything with carotene and other antioxidants are excellent cancer fighters. And don’t forget the fiber … we all know what that’s for. Other fantastic veggie and fruit choices on her list included kale, spinach, broccoli, legumes, tree nuts, strawberries, cantaloupe and blueberries.

I left the dietician’s office determined to do as much of this as possible. (See a few meal ideas below.)

So the question is, how do I find the right balance? I want to enjoy the life I’m living, and eating bark and dirt is not my idea of living. I’ve pretty much cut out all red meat, switched my chicken, fish and turkey to organic, and try to eat fruits, veggies, greek yogurt and nuts. But I still eat some processed foods. And unless you’re a truly dedicated vegan, you’ve got to have your chocolate and treats once in a while.

I’m trying. I really am.

That’s why I was so bummed when I went back for a second visit and discovered I hadn’t lost any weight. I couldn’t believe it. The dietician assured me that, diet-wise, I was doing as much as any of us can do. But here’s the thing I didn’t know:

Almost all cancer patients lose weight (that’s what makes many of them look so ill). Just my luck, though, breast cancer patients usually GAIN weight. HOW CRAZY UNFAIR IS THAT??? I mean, really. When I was diagnosed with breast cancer, I thought the one good thing about it was that I could count on dropping those extra pounds I’ve always been trying to lose. If I have to be sick, the least I can be is skinny, for crying out loud! I looked at this woman wide-eyed, and she just laughed at me. Afterward, I asked around and it seems she’s right; many breast cancer patients do gain weight. Usually it’s the fault of the medications we take and the changes our reproductive system goes through. So basically, we are all screwed!!!

So she goes on to tell me that, despite all the weighty forces of evil against me, the good news is that I’ve maintained my weight in the 6 months since the initial gain after radiation treatments. She attributes it to the fact that I’m walking most mornings and trying to eat right. I know that’s something to be grateful for — but now and then I do wish for my flat stomach again.

* * *

A few ideas for quick and delicious meals fit for a Stage 4 cancer patient

Breakfast
Greek yogurt with cinnamon or cinnamon in organic oatmeal, or cinnamon on shredded wheat with unsweetened almond milk (the vanilla’s not bad). Top any of these breakfast dishes with flax seed powder for an extra boost of fiber, antioxidants and essential fatty acids.

Lunch
Whole fruit preserves with a not-too-thick layer of organic peanut butter on whole wheat bread. It’s a very satisfying in a stick-to-your-ribs kind of way.

Dinner
Organic chicken tenders sautéed in flax seed oil and fresh garlic — get the garlic in the pan no more than 10 minutes after cutting or it  will lose properties — along with grape tomatoes and spinach (or broccoli or kale). Toss it with some whole wheat pasta and you’ll have a well-balanced, healthy dinner with a wide variety of the specific properties you’re supposed to eat. If it seems a little dry, you can use a little organic non-fat chicken broth, too.

Good Intentions

I finally had a little time away from doctor appointments and went to my favorite store, Target. The greatest store ever!!! Anyway, I was happily shopping when I sort of noticed a woman following me around the store. It took some time, but she finally did approach me. I was wearing my compression sleeve and glove, as I always do, and she pointed it out and asked if I had cancer. I said yes, and she went on to say she’d also had breast cancer, stage one, and she’d had to wear a sleeve as well.

Then she told me she no longer has to wear one and it will get better for me, too. Her intentions were good. She told me her daughter also had cancer and her niece had stage 4 breast cancer. I told her I also had stage 4 breast cancer. She gave me a hug and we spoke for a while, as I said I was in a good mood. Shopping does that for me!!

So I let my guard down and asked “the question”: “How’s your niece doing?” She just gave me this horrified look. She knew what she had done. She’s gone, she said. Tears started rolling down my face. Crying … in Target, my favorite store. Why did I ask that question??? Deep down I knew the answer, but I had to, was compelled to, ask.

Why is it when people find out you have cancer they have to share every cancer story they know with you?!?! My sister had cancer, my brother had cancer, my best friend, my mom, on and on and on. I left Target and went straight home so exhausted from tears that I slept the afternoon away. I’d been having a good day until I met a well-intentioned “cancer sharer,” as I call people like her. And just like that, I was no longer having a good day.

Everyone has a different way of sharing. Some people talk, some people write, some people need time and space. I’m writing now, but it’s taken me two years to get here. I didn’t even tell my family or friends about my blog until a couple of weeks ago. When I’m out and about, I don’t want to hear anybody’s sad stories of dying from cancer!!! However, I may be interested in hearing about SURVIVING. Stories of hope, strength and encouragement should be shared, but, even then, only if the person you are talking with wants to hear them.

I recently heard that a friend of mine is ill. I want to help her. I want to offer her advice, to take some of the burden off of her. But is that in her best interest … or mine? I’m torn because I don’t think we should have to go through this all alone. We’re strong women with children and active lives and we are fighting cancer … and that means something! On the other hand, I sure don’t want to become an unwelcome “sharer.”

So how do we know if they want to be heard? I suppose we need to ask before we speak. We women have got to stick together and encourage positive thoughts instead of focusing on horror stories. Who benefits from depressing discussions of illness?

I will say one good thing did come from this experience: The woman I met in Target did think I was in my early 30s. As a woman in her mid-40s who is being pumped full of cell-killing drugs, I have to say I was very pleased with myself. So that is what I will remember when I go back to Target. Because no one is going to ruin my favorite shopping store with negative vibes.

Hospital Fallout

Hospitals. What can I say about hospitals? I’m glad they are there, they help millions of people — including myself — but it sure can be difficult to stay in them over and over again for any extended period of time. Since November, I’ve been in the hospital four times. This most recent hospital stay, the result of a rampant infection, completely wore me out.

And the fallout continues …

More than a month later, my arm is still healing. You see, I can only use one arm for IVs and blood work. But the hideously strong medications blew out a vein once a day until we needed to resort to using my foot.

My lymphedema has gotten worse. Before, it was just my upper arm. But this latest infection — which led to my latest surgery — caused it to expand to my lower arm and my back. Now, I have to put a soft cast on my arm, then compression garments, then gloves … and don’t even get me started on what they are doing to compress my back and chest. I can’t wear any of my favorite clothes. Now they want to include me in a trial by wearing some sort of vest with arm that I need to plug into every day. Wow, I’m exhausted just writing it down … and that was all just this week. Can’t wait to see what’s in store for me next week!!!

And have I mentioned the nausea? I think I’ve been nauseous since the day I got my diagnosis. But a whole new level of nausea overcame me with this last infection. First, it was from those evil antibiotics. Then, post-surgery, it was the painkillers. They’d hit a nerve when they put the drain in, and my pain was off the charts. The powerful painkillers they gave me made me so sick I couldn’t lift my head off the pillow. I had to lie really, really still … even moving my eyeballs made the room spin. I had to concentrate on the TV to keep my eyes focused on one spot. When I couldn’t stand it anymore, I refused all painkillers. I know it sounds crazy, but I can handle terrible pain easier than I can tolerate the nausea. That kind of nausea just overwhelms and debilitates me.

A month later, the nausea hasn’t gone away. But it’s nothing like it was on the painkillers — except on the two or three days a week that I have physical therapy to try to reverse some of that new lymphedema. Apparently, having a PT mess around with your lymph nodes really messes with your whole system.

No matter what I do, I just can’t get rid of the nausea! It follows me wherever I go. I can’t drive home from my frequent trips to Johns Hopkins without taking every anti-nausea drug in my arsenal. Today, someone told me told popcorn cures nausea. How crazy is that?! I know people mean well when they offer advice like this, but I have serious doubts about most of it. Take ginger, for example. The cancer cookbooks swear by it, and my friends spent months cooking with it. I refuse to eat anything ginger again!!! It doesn’t work for me!! Yuck!!

The worst fallout of this most recent stay was how hard it was on my children. Especially my daughter. When I’m in the hospital, I can’t take her to the bus stop in the morning. I can’t come to school for lunch. I can’t take her to her activities in the afternoon. I can’t be there for her at all.

When I came home from the hospital last month, I noticed she was limping. My 9-year-old soccer star said her ankle hurt whenever she put pressure on it. I didn’t want to let any grass grow under this problem, so, despite my incredible pain and the drainage tubes hanging from my body, I drove her from appointment to appointment to get some answers. I didn’t expect the answer to be related to me.

I know it is so difficult for my kids to have a sick mom all the time. When I came home from the hospital, Bella seemed so lost, so longing to spend time with me, but I could barely get up the stairs to put her to bed. I’m always feeling like I have to make up for time lost or for not being like some of the other moms. No matter how hard I may try, I can’t seem to catch up.

So now, the doctors believe she is expressing her emotional pain in a physical way. When I asked the doctor if it had anything to do with me — with my cancer — he said that it was “very possibly so.” Apparently, this is somewhat common among children, especially girls. The physical pain she feels is very real, and the doctors even prescribed her physical therapy. I prescribed her lots of time with me. I’m happy to say both treatments are producing positive results.

But that feeling of always being behind, of being less …, well, I wonder how my children will look upon their childhood as they grow into adults. I wonder what memories will be stronger: my illness and all I couldn’t do, or my strength and all that I tried to “get in” or accomplish for them. It’s all for them. I hope they know they are the strength that pushes me within and the light that guides me forward . I hope they remember I always wanted them to be worry-free and happy. To not suffer the fallout.

Loss of Hair, Loss of Self

I look in the mirror and I don’t see myself.

It’s not like it’s bad, but I don’t really look like me. Even though its been a year, I still don’t feel like myself.

Losing my hair was a huge deal. I’d never realized how much I identified with my hair. So much so that when I lost it, I couldn’t look at myself in the mirror. I was ashamed. I didn’t want to face my friends and family.

You can never really prepare for what chemo will do to you. It made me feel so sick. And my shoulder-length, straight, thick hair kept falling out and out and out. I needed to get a broom to sweep up the bathroom every morning.

The constant shedding got to be too difficult, so I went to my trusted, longtime hair stylist on a Sunday when the shop was closed to shave off the remaining strands of my hair. I had no idea just how emotional it would be for me, so, when she asked, I allowed my sweet daughter to join me. Big mistake.

When my hair was shaved, tears just rolled down my face. No matter how hard I tried, I just couldn’t keep them from falling. My daughter was rubbing my leg and telling me how beautiful I looked. My 8-year-old daughter. It is a memory I don’t enjoy bringing to mind. Yes, I had a beautiful wig to wear (which is a long story in itself), and felt OK with it on. But from that day on … even still today … I don’t see the same woman in the mirror. I remember my husband’s face when he saw me when I returned home. It was that swift look of horror before he could put his game face on. My son gave me that same look.

From that day, my son and daughter never wanted me to leave the house without my wig on. As time passed, I didn’t care so much anymore and the wig was itchy, but my children felt better when I wore the wig. My Bella would say, “Mommy, are you going to wear your wig when you come to my school?” “Mommy, if my friend so and so comes over, will you wear your wig?”

So today, even though my hair is growing back — curly! — I still don’t see Viki in the mirror staring back. It’s not like I hate the person I see. It’s more like I’m resigned to the person I see. My mom asks me why don’t I cut my hair short and spiky like when it was first growing in? It looked so cute and contemporary then, and I know it looks more like a mullet now or something out of Vegas in the Elvis days, but I need to get it back to that shoulder length. Somehow, I’ll get control back then. If I want to cut it off at that point, at least it’ll be on my own terms. I’m in control, not cancer. But I wonder, when it’s shoulder-length again, will I look like me again? I fear not.  Certainly, there is the possibility that it will never get that long hair again because my disease will return and I’ll lose all my hair again … but mostly I fear that that person I’m looking for in the mirror is gone.

I realize it doesn’t have to be bad to be different, but when you are used to something for 40+ years, it takes more than a year to grow accustomed to someone else when you look in the mirror.

One Year at a Time

Wahoo! It’s 2012 and I made it through the year!!! One year down and, hopefully, many more to come, but I’ll take a year at a time.

Boy, what a relief to see 2011 come to an end. I sure do hope this new year is less stressful. I realize I will be on chemo and cancer drugs for the rest of my life, but the current drugs I’m on are not as debilitating as the treatments I’ve endured this past year. The bottom line here is (just like the song by the Dixie Chicks) I have a Long Way Around, but, dammit, I’m gonna look forward to a new year.

As a mother, I strongly believe I owe my children hope and a positive attitude, no matter how long I may have on this earth. Children are vulnerable and need love and continuity, no matter how long we are given to provide it. I’m getting stronger, and I’m going to start walking outside no matter how far I can walk. Going outside in nature is important. I want to breathe the air and know I’m alive. Forget that treadmill.  I need to get outside, listening to my favorite tunes. Or just listening to my thoughts.

One step at a time.

Just like with this disease … one treatment at a time, one positive thought at a time, one favorite moment with your family at a time. If I can say this with my stage 4 diagnosis, anyone can believe it.

It helps that I’m feeling better now than I did through most of the holiday season. In November, I ended up back in the hospital with another infection. Yuck. So many powerful antibiotics! They sure can do a number on you. They made my November and much of my December miserable.

***

Throughout the ordeal, my Jere was so sweet. Back in November, he’d driven me the hour-and-a-half to my doctor to check out the redness spreading across the left side of my chest, but we weren’t so prepared for the doctor to say I needed to go check into the hospital for surgery the next day. I was so upset to be there and missing my daughter’s 9th birthday party, but Jere made it OK.

And after surgery, the nurses on the floor were so kind to us, so unlike my previous hospital experiences. (Jere and I think it’s because we were on the trauma floor, where many of their patients couldn’t even speak!) One nurse was so sweet … he found a chair that pulled out to a bed, staked a claim on it, and pushed it into a room for Jere before anyone else could take it. It was like we had a six-day vacation. Jere moved in, they gave him a hospital gown to wear (since he hadn’t brought extra clothes with him) and waited on him with drinks and snacks. What a character my husband is! I know we were there for scary reasons and there was pain, but it was surprisingly fun. Jere held my hand at night and ate all my hospital food. I will always remember that hospital stay with a smile … all because of my Jere!

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I know things don’t always go my way, but I’m so lucky. I have a great family and unbelievable friends. (Remember, my friends fed my family for a full year!!! 365 days. That’s a lot of love!) And now I’ve got a new year to look forward to. Wow, that’s so corny but somehow OK.