Preparing for Chemo

Preparing for chemotherapy probably sounds like preparing to die. The word chemotherapy is frightening. It conjures up images of hair loss, vomiting, and pure misery. Truth is, chemo sucks, but if you're prepared it sucks a lot less.

How do I know this? Because I've been a chemotherapy patient since August 2005. I started with moderately high dose IV chemotherapy on a three week cycle. This lasted until January 2007 when I switched to weekly pills at home. After 23 cycles of IV chemo, and over 365 doses of weekly chemo, I'm an expert at preparing. Tomorrow is chemo day. Since I'm preparing for it, I thought I'd share what I've learned.

Preparing for Chemo

Every chemo protocol is different. They don't all have the same side effects, but a lot of these drugs cause nausea, fatigue, taste and smell changes, and hair loss. So, I'll focus on those.

If your protocol requires several IV cycles, get a port. I waited to get a port and scarred the insides of my veins. IV's don't work for me very well anymore. Everything about ports will be carefully explained to you by your doctor, so I won't do that here. Wait, did I say everything? I meant almost everything.

What no one will tell you is the rubber inside the port might make a popping sensation the first time it's accessed. It didn't hurt, but the pop scared the shit out of me! So, if it happens, don't freak out like I did. It only happens the first time, after that it's fine. The nurse cleans your skin, pokes the needle in the port and it's over. It's much easier than an IV. If you're needle phobic, or sensitive to pain, ask for Emla cream. It numbs the skin like magic. Remember, you don't have to watch what the nurse is doing. Hold still and look somewhere else.

The process of getting chemo might take hours. Sitting in a recliner in a treatment room, attached to a pole, with a pump and IV bags, is stressful. It is also boring as hell. It's not stuck in an airport boring. I mean it is fourth grade, staring out the window on a spring day while the teacher drones on about random bullshit, boring. If you don't have a tablet, now is the time to buy one, or borrow one. Playing a thousand games of Angry Birds, or watching movies, will help with the boredom and stress.

Nausea is a common side effect of many drugs. It's also a scary one because we've all puked and we know it sucks. Your doctor will prescribe a combination of anti-nasuea meds. Some will go in your IV before the chemo meds. Some you'll take home. Once you get home, take your anti nausea meds before you feel sick. If you wait, you'll puke. Trust me. I made that mistake for you so you won't have to. The anti-nausea drugs work amazingly well. If you're still nauseated, talk to your doctor. They'll change the drug combo and help you feel better.

Fatigue after chemo may be profound. I slept off and on for at least five days after each treatment. It might have been from the anti-nausea meds, or just the powerful medications. But, I was knocked on my butt for days. To deal with fatigue, plan for it like you would a trip: pay bills, do laundry, clean the fridge, arrange child and/or pet care. Next, gather food (suggestions later) and prepare a nest. It might be on the couch or your bed. Before your first treatment, figure out a quiet place where you can watch TV and sleep for days on end if necessary. You might be down for days, or up and around the next day. Either way, plan on resting. You've earned it.

Taste and smell changes. Not all drugs do this. If yours does, I'm not gonna lie to you: it sucks. I was smelling phantom scents: chemical smells and rotting smells. Fortunately for me this only lasted a few days after treatment. If you're dealing with altered sense of smell, stay away from scents you normally like. The hand lotion you love will be tainted and you'll hate it later. Avoid strong cleaners, fabric softener, and laundry soap. Remember, the weird smells aren't real. Hopefully it will be only temporary.

Taste changes also suck. My chemo drug made me feel like I was eating metal shavings. The metal taste couldn't be masked with toothpaste or mouthwash, because the foul taste had nothing to do with my mouth. It was in my brain. Sucking on lemon drops helped. Mint made it worse. But, that's me. You'll have to figure out what helps you.

Food choices while recovering from chemo also matter. Don't eat anything you normally like. Once you eat it with an altered sense of taste and smell, you'll end up hating your favorite food. Stick to bland things like crackers, rice, vanilla pudding, and vanilla wafers, with tofu or chicken breast for protein. Ginger ale helps, too.

While I was going through IV chemo, I slept six hours, woke up and ate, slept ten hours, and ate again. It was a week long haze of grazing and sleeping. Then I'd emerge from my chemo cave. My sense of taste and smell was back to normal. The nausea and fatigue was better, too. The worst of it passed and for the next few weeks, I felt much better.

Hair loss didn't go away, though. No one told me my scalp would hurt. My head was sensitive to touch. I chose to wear the softest knit hats possible. What you chose is up to you. Your hair will grow back. Promise. Mine did. We changed the medication from IV to pills and I got to grow my hair.

My weekly chemo routine is pretty similar, only feeling shitty lasts one day instead of the entire week. In a few hours, I'll be back in the chemo cave. Tomorrow I'll feel sick to my stomach and tired. I'll bolus a crap load of insulin through my pump while I eat crackers and drink ginger ale. After 14 hours, I'll eat a bland dinner. The next day I'll wake up feeling much better.

Chemotherapy sucks. There's no getting around that. But, I've learned that planning ahead makes it suck less. I look at chemo like a tollbooth on the highway of life. It's the price I pay for survival. After over 365 chemo days, it's still worth the fee.

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Keeping the pace

Dealing with chronic illness is endless. We deal with medications to treat our illnesses, and medications to counter act the side effects. We go to doctor’s appointments when we would much rather be doing something else. Our illnesses flare up when we want to go on vacation. The only constant in dealing with chronic illness is how unpredictable it is. When I first got sick, I wanted to get better. My only reference point for illness was the flu, where sickness lasts for a few days, weeks at the most, and then life goes back to normal. It took me a while to understand normal evaporated without my consent. I expected to get better, and then got upset when I didn’t. I don’t get upset over progression any more, though. I have learned to expect the unexpected.

I don’t live in bitter resignation, gritting my teeth every day. I also don’t live in false optimism, looking for the silver lining. In that space between bitter and overly optimistic, is a quiet acceptance. I’ve learned that I cannot outrun chronic illness. Rage doesn’t make it go away. Neither does looking for the good in a bad situation. Like it or not, chronic illness is my running partner. What helps me most is regulating my pace.

Five things help me deal with this every day:

1. Make friends with the word No
My parents were active with several social service organizations. When I was growing up, I watched them say yes to every request. Will you write for our newsletter? Will you organize this event? Will you host this seminar? They always said yes. When my mom retired from her job, her social service workload quadrupled. People started saying, since you’re not working, will you be able to… I saw she was unhappy, so I told my mom she could always say no. She looked at me like I had green beans growing out of my ears. The idea of saying no never occurred to her. Perhaps because I watched my mom getting overloaded with requests, I learned the value of no. The word no is my friend. Saying no allows me to focus my limited energy on things that really matter to me.

2. Know your limits
Chronic illness can limit our physical abilities. A five hour hike in the woods might be beyond your abilities. It’s valuable to know this about yourself. Friends and family who remember who you were before chronic illness can try and push you, but you know yourself. The people who love you don’t want you to end up in the hospital because you pushed too hard.

3. Gently test your limits
I know this sounds like a contradiction, but many chronic illnesses flare up and die down. When in an active phase, walking from the living room to the kitchen may be exhausting. It is easy to become afraid of moving when you are physically wiped out and all you did today was take a shower. I have been there. I would still be there if I didn’t learn I could stretch my limits. My rule for limit testing is after three good days in a row, I can try doing something new.

4. Forgive yourself for weak days
Some days are weak days. Chronic illness can make it hard to get out of bed. Sometimes it is hard physically. Other days it is hard emotionally. When you are having a weak day, you have permission to acknowledge it. You have permission to rest.

5. Work to redefine what is normal
What is normal for me now is struggling to maintain my balance, muscle aches, poking myself with needles, taking lots of medication and resting frequently. It took time to make this feel normal. Since my illness is progressive, I have to keep redefining normal as my abilities change. Making room in my life for chronic illness helps me pace myself for the long haul. Life as I knew it ended when I got sick. Life as I have it now is still worth living.

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Don't Stay Sorry For Yourself

"Don’t feel sorry for yourself." Another phrase people say to shut down my emotions. Is it better to live a lie that makes other people feel more comfortable, at the expense of myself? Of course I feel sorry for myself. My diabetes has been a bitch lately. No matter what I do I have high blood sugars. Low blood sugar can kill me in minutes. High blood sugar is what leads to all the diabetes horror stories. I’m frustrated and angry.

All day long I see people who don’t live like this, people who have no idea what it is like to have their body betray them. I want to trade bodies. I can’t, and that makes me even more frustrated. Sometimes, I feel sorry for myself. Feeling sorry for myself is liberating. When I feel sorry for myself I’m being honest. I’m grieving the loss of my own body. Unlike grieving the death of my mom, there isn’t a moment where I can find resolution. With my mom, I can tell myself, “She’s not suffering anymore.” With my chronic illnesses, it’s not like that. My own suffering goes on.

Of course I feel sorry for myself. When I acknowledge how I feel, I give myself a moment to take the mask off and be real. So many things in life are phony. Feeling sorry for myself makes sense sometimes. When I’m frustrated and unhappy, I allow myself to feel it all. I let it rise into a tantrum when I need to. I let my tears fall. I become my own personal thunderstorm. For a while, anyway. Grief and chronic illness go together. To have a chronic illness is to always be aware of loss.

Telling someone, “Don’t feel sorry for yourself,” doesn’t help. It just shuts down the freedom to be real. Being real is more valuable to me than a fake smile. I did enough pretending when I was a Christianus Sickus, pretending to be beatified by my illness. Now I get to admit that it sucks sometimes, because it does suck sometimes.

Instead of telling myself, “Don’t feel sorry for yourself,” I say, “Don’t stay sorry for yourself.” Wallow for a while. An hour. A day. A month. Even a year if necessary. As long as it takes to let the pain out. Then I can stand back up inside. Self pity is a place I visit, not a place I stay. I don’t want to live in a permanent thunderstorm, raining down pain on myself. I need to build shelters in the rain, because the rain isn’t going anywhere. This blog is my shelter in the rain. If you need a shelter, you’re welcome to join me here.

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Positivity is not a cure

“Keep a positive attitude.” It’s one of those phrases people say to shut down my emotions. A positive attitude is easier on other people. It makes chronic illness seem less scary, and less difficult. Everyone is familiar with acute illness, an earache, flu, or a cold that slaps them down for a bit, but then they recover. Chronic illness isn’t like that and it is hard for people who don’t have one to understand what it is like.

A positive attitude will carry you through a stomach virus, or even help you recover from surgery. But, when there is no recovery, the advice just hurts. The only way I can keep a positive attitude is by pretending that this doesn’t bother me. Truth is, this does bother me. Some days it bothers me a lot more than I let on. A positive attitude doesn’t change my reality. My reality is brutal, like January in Minneapolis. Acknowledging the brutality of chronic illness doesn’t mean I am giving up. It just means I know I am fighting a battle I cannot win. I am free to lament. Free to grieve my losses. It is spring right now and all around me people are riding bicycles. I see them going up and down the street. I live between a park and a bike path. I remember riding a bike. I remember how it felt to push the pedals, to glide down hills with the wind in my hair. I remember riding my bike. I loved my bike. Now it is gone and I am still here. I am here watching people do what I can’t. On this warm spring day I am free to recognize that I feel left out. I am free to feel tears in my eyes. I am free to grieve the loss.

A positive attitude is not a cure. Painting a happy smile and a rainbow over my head doesn’t change the feeling of loss. It just adds guilt to the sadness, because I don’t feel like smiling through the pain. Instead of keeping a positive attitude, and  pretending that everything is wonderful, when it isn’t, I’ve learned to work on balancing my perspective. No, I didn’t sign up for all this. If I had to choose the one person on earth least likely to handle chronic illness well, it would be me. But, I am here. I am alive. I am outside looking at a garden full of flowers. I planted those flowers 15 years ago, three months after cancer surgery. The flowers greet me each spring, reminding me where I’ve been and how hard I fought to get to this place.

The flowers remind me to balance my perspective. I cannot fix what is wrong. I can acknowledge its impact openly and honestly. Then I can lift myself up again. The garden is beautiful. There is still beauty in this world. The beauty doesn’t always out weigh the ugliness, but I’m learning to pause to look for beauty nonetheless.

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Five Ways Atheism Helped Me Deal With Chronic Illness

When I got sick, my church expected me to respond like a living saint. No complaining, no questioning, joyful and reverent… I spent three years trying to live up to their expectations. I went to chapel services and was anointed with oil for healing. As if rubbing salad dressing on my forehead was going to cure muscular dystrophy. The words of comfort they offered were empty. God knows what you are going through. God understands. God cares. Trust in God. Lean not on your own understanding.

Stop. Just stop. I dreaded going to church. Being called Job grated on my nerves. Something had to change. After three years, I decided to stop going to church. I still wanted to hold on to my faith, so I did the one thing no Christian should ever do: I read the entire Bible.  When I started reading, I was a Christian. When I finished reading the Bible, I was an Atheist with a capital A. People assume I am an atheist because I am angry with God for not healing me. That’s isn’t why I am not a Christian. I’m not a Christian because of the verses pastors leave out during their sermons. I read about a talking snake, a magical boat, a talking donkey, giants and unicorns. Many people have written extensively about the craziness that is in the Bible and done a better job than I could ever do. My point is, I read the entire Bible and I was amazed anyone believes this baloney is real. The Bible is wrong about science, and math, and reality. It reads like a book written by desert nomads who were guessing about how the universe worked. It was written by ancient people, for an ancient civilization. It is hard enough for me to imagine life during the American Civil War, let alone comprehend the social and moral rules of a civilization 2000 years gone. Reading the entire Bible cemented my decision to stop going to church.

I stopped praying and started dealing with my new reality face on. Do you know what? It was a relief. Once I embraced atheism, my life improved in these five ways.

1. My emotions belong to me   

By walking away from religion, I freed myself from the pressure to be a Christianus Sickus. Having to be a living saint added a level of pain to my life that I no longer carry with me. When I am sad because my body doesn’t move like it should, I get to feel sad. I get to feel angry and frustrated. I have a progressive, incurable, sometimes fatal, neuromuscular disease. I also have insulin dependent diabetes. Know what? That sucks. I don’t have to pretend I’m OK. I don’t have to put on a happy smile and go to church, nod and smile and laugh when people call me Job. I just get to be me.

2. There isn’t a deeper meaning to chronic illness

I don’t have to search for a metaphysical reason why I have chronic illnesses. I don’t have to figure out what a deity expects me to do with it, either. Not everything that happens to me has a higher purpose. Chronic illness has no higher meaning for me than falling on ice. Why did I get sick? Because I live on a planet where sometimes the lion catches the gazelle. There is no reason why this happened to me. I just know I didn’t cause it.

3. This is not part of a deity’s good plan for my life

If someone deliberately gave a person muscular dystrophy and diabetes as part of a master plan, they would be evil. Progressive, incurable illness, where you get to helplessly watch your body fall apart and then die, is a cruel fate. I don’t have to pretend it isn’t cruel. What is happening to me is tragic, but it isn’t anyone’s fault. A deity didn’t cause this any more than I did. Disease is not part of a master design, but a battle we human beings have been fighting and winning with science. When I inject insulin, I don’t thank a deity. I thank Dr. Banning and Dr. Best. I thank science I have insulin. It is because of science that I am alive.

4. I don’t have to pretend this is a blessing in disguise.

If a mass murder was given my illness as a punishment for just one week, it would be cruel and unusual punishment. Chronic illness is ugly. It makes no sense. Making sense of nonsense and accepting the unacceptable is a way of life for me. This is not a good thing pretending to be a bad thing. It is a bad thing. I don’t have to paint chronic illness with pretty rainbows. I can face reality with courage and truth.

5. I’m responsible for how I respond to my chronic illness

This is a huge gift to me. I’m free to respond to how my illness impacts my body, cognitive abilities, and emotions. I don’t have to wait for rescue from on high. I can rescue myself right now. My life is not over. It’s different from what I expected, but still worth living. I’m happier now than when I was a Christian. The enjoyment I get out of life is simpler and more pure. It’s not hemmed in by platitudes. Life is messy and doesn’t always make sense. That doesn’t mean life isn’t good.

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