A recipe for living with cancer.

Archive for July, 2012

On the Good Days, I’d Don’t Post

Have you noticed a pattern? When I first have the infusion and feel pretty rotten I manage to write prophetic and entertaining pieces pertaining to the way I feel. As I start to come out of the fog the pieces change their tone as the physical changes mediate and my mood lifts and I look forward to the fleeting days of feeling well. I write lots when feeling like crap and as I feel more human I write fewer pieces and when I am feeling good and able to do things, let the post go for days. So you can assume if there are no new posts, I am doing pretty well.

This time as I started to feel free of the shackles of chemo therapy, I realized one morning that I’d slept through the night, 7 hours without getting up. I normally get up once or twice a night but since beginning chemo I can’t sleep more than two hours without having to get up. Part of this is due to the massive hydration trying to avoid potential kidney problems as a result of the drugs. I have worn a path in the floor with the repetitive, get up, go, go back, sleep.

Most of the time Sophie avoids the path, but the other night I stumbled onto this soft fluffy mass in front of me. I think I may have had my eyes closed and I moved in slow motion as my toes hit this fuzzy mass. As I started to fall forward the fuzzy mass traveled up my shins to my knees, I fell further and found the fuzz at my chest and as I grabbed onto the fuzz it slipped gently under me and cushioned my fall. I lay on the floor my arms wrapped around Sophie without a bruise. She must have stood up as I fell and ended up being the perfect foil to my gymnastics. Should be a new sport for the Olympics…falling on dog!

So sleep has been one of the missing pieces in my feeling better. These last four days I have slept through or almost through the night and I’ve woken up with a clear head and the desire to get up and do something.

Over the last few days I made Oz a birthday cake in the shape of a dump truck with rice crispie hippos spilling out of it; I made Tom a strawberry rhubarb pie for his birthday he finally caught up to me and is now 60; and I made a tart for Brent to share with the folks at MCN. Today I am on a hunt for pickling cucumbers and tomorrow I will pickle with help from my friends.  Time is of the essence for fruit and vegetable ripeness waits for no man and certainly doesn’t coincide with my chemo treatments.  Before the cukes are gone and the local peaches are a sweet memory I must hurry to accomplish…something…over the next three days.

I am driven to accomplish as much as I can in these days I feel able, so I know you will understand if on the good days, I don’t post.

Thank you for all of your prayers and good wishes, cards, phone calls and thoughts –Thursday is treatment 3, only 5 left after that, 5 feels like a good number today.

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Gamblers, Heros and Survivors

How can you understand what chemo therapy is like unless you’ve gone through it? After lots of time to think about this and still more to come I’ve come up with an equivalent that might ring true to people lucky enough not to experience it.

Think about the worst illness you’ve ever had, lets say a really bad flu that lasted a week and when you thought you were better you had a relapse.  The aches, the fever, the chills, the vomiting, etc, not being able to eat, light bothers you, you can’t read or watch TV, you just want to curl up in a ball and have it over with.  Then even when you are done you feel weak, washed out and want to sleep for another week.  OK have I set the stage?  Now think of that illness and realize that once every three weeks for a total of 8 times, you have to go through it again.  You have no choice, you know exactly the day it will start, you know exactly how bad you will feel and you know there is nothing you can do to stop it.  Add to that the knowledge that each time it will take a day or two longer to recover and you may get another symptom, like an infection and you need to add a stomach wrenching antibiotic, or your nail beds will turn black, or your hair will fall out, or your mouth will be full of sores and even though you may want to eat you cannot.

This is what chemo patients are given, a schedule of pain, discomfort and hardships and as many tools as possible to deal.  I have never before understood the bravery of all chemo patients, the intestinal fortitude it takes to go through this, the sheer will to know exactly what horror to expect, and to continue to sit down in that chair with a smile without screaming “what am I doing here” and running out the door.  I am just starting to feel better today and one of my first thoughts this morning, a week from Thursday I have to do it again.

Each man and woman who consciously makes the decision to sit down in that chair every two or three weeks and expose themselves to the hardships involved is a hero. Those who have gone before and those who come after, all heros.   The word survivor is aptly applied to those who have fought this battle successfully and hero should be used for all those who have fought.  Now I don’t feel like a hero, but I now look around that infusion room at the women in all those chairs who are on infusion 7 or 3 or 5, they are all my heros, if they can do it, so can I.

When we get a diagnosis of cancer we all become gamblers.  We all take a gamble, we play the odds when we get chemotherapy, some of us get better odds than others, certain cancers have better outcomes than others.   I am a gambler every three weeks when I sit down in that chair and allow a stranger to put things into my body that I know full well will hurt me as well as help me.  I am gambling that the help part outweighs the hurt.  I hope to win this bet and become a survivor and then become a hero to those who follow after me in that chair.  The hardest part of this bet…I have wagered  my life.

Dog Breath

I am having difficulty with a few things during chemo, eating, sleeping, pain, but one of the things making me want to hurl my guts up…dog breath.  I love Sophie, everyone knows that, and she has dog breath, everyone knows that too, but right now as she sits mindlessly panting under the desk as I write I want to run screaming into the other room.    Here is team Captain Reviva giving Sophie a pep talk about breath freshness!

This is kinda how I feel on chemo!

STUCK!

Thick Chewy Granola Bars

A healthy easy snack is always appreciated when you have no appetite.  Kalen and Josh made these for me when they were here.  I cut them into 1′ squares and keep them in the freezer to grab when I am not hungry but know I should eat something.  Cory came to visit and I gave him some….here is the recipe.

Thick, Chewy Granola Bars

This recipe is adaptable in dozens owritten it is the version Josh and Kalen made.

1 2/3 cups quick rolled oats (if gluten-free, be sure to use gluten-free oats)
1/2 cup granulated sugar
1/3 cup oat flour
1/2 teaspoon salt
1/4 teaspoon ground cinnamon (i didn’t like the cinnamon with the peanut butter, I would leave one or the other out, up to you)
2 to 3 cups dried fruits and nuts (total of 10 to 15 ounces)*
1/3 cup peanut butter or another nut butter — we used peanut
1 teaspoon vanilla extract
6 tablespoons melted vegan smart balance (or oil, or butter, your choice)
1/4 cup honey, maple syrup or corn syrup– we used honey
2 tablespoons light corn syrup –left out we added extra honey
1 tablespoon water

Preheat the oven to 350°F. Line an 8″ x 8″ x 2″ pan in one direction with parchment paper, allowing it to go up the opposing sides. Lightly grease the parchment paper and the exposed pan, or coat with a non-stick spray.

Stir together all the dry ingredients, including the fruit and nuts. In a separate bowl, whisk together the vanilla, melted butter or oil, liquid sweeteners and water. Toss the wet ingredients with the dry (and peanut butter, if you’re using it) until the mixture is evenly crumbly. Spread in the prepared pan, pressing them in firmly to ensure they are molded to the shape of the pan.Ppress down really hard, pack it down!

Bake the bars for 30 to 40 minutes, until they’re brown around the edges . They’ll still seem soft and almost underbaked when you press into the center of the pan but do not worry, they’ll set completely once completely cool.

Cool the bars in their pan completely or lift out by parchment and cool on rack.  Cut them when completely cool.

We used, craisons, almonds, raisins, chocolate…but you may use ANYTHING!  Any dried fruits, nuts, seeds, coconut, chocolate can be used.

The Perfect Storm

Yesterday was a terrible day, no a disastrous day, a total meltdown. One of those days where everything lined up and coincided and produced the perfect storm. I must complain that I hate chemo, it sucks, its frustrating, it’s painful and when I am not mindful of this monster it gets the best of me, which is what happened yesterday. Normal non chemo life, I accomplish things, I do lots of things, if I want something I never feel the need to ask for help, I just get it done, and oh, I can squeeze in a batch of bread and cupcakes if I need to, this has always been me.

The habit of not asking for help is like swimming at the beach in the ocean waves, if you get knocked down, get up and either get out of the water or learn how to manage the waves. I’ve always learned to manage the waves through gulps of salt water, sand in my shorts, and I walk out when I am ready—OK so I don’t go in the waves at the Jersey beaches, but its my attitude right! Yesterday the waves knocked me down, rolled me around, pinned me against the ocean floor until I yelled help and oops I’d forgotten to ask someone rescue me.

I had two simple things to do yesterday– forgetting that during chemo at certain times, two is too many, and nothing is ever simple, I had Pilates and I needed an eye exam. What transpired was completely my fault, was in part due to my stubbornness, and hopefully will be the last time I entangle myself in such a predicament.
Added to those two simple things I wanted fresh bread and when I actually want to eat something I try to take advantage. I considered calling Miriam and asking her to make me some of her vegan challah, but she was at work and I knew it was an easy recipe; I could throw it together after Pilates. Go ahead, roll your eyes, say, “really Barb, really are you that dumb”, yes I am.

Pilates went well, Lynn is getting to know my days and when and how to push me and I went out tired but feeling OK. I waited for Tom and wanted to ask him to come get me for my eye exam so I didn’t have to drive myself, but I really wanted to go home and lie down before the exam…so I left. I got home and threw together the challah dough (I realize at this point you are calling me a fool, an idiot and other non sequiturs) and collapsed for 35 minutes. I drove to my eye exam and realized I kept driving around and around the parking garage trying to find a parking space when I noticed I couldn’t “read” the signs. I had developed a migraine and the visual aura had taken over my field of vision…now how in the world was I to take an eye exam if I could not see to read the charts?

End of story, I took some migraine meds, the aura left my field of vision, I took the eye exam and went back to the car with a funky pair of sunglasses the office gives you to make it home with fully dilated pupils. I thought I was home free until I looked at the clock, 4:30PM and I was going to try to get home from Oakland. I should have called Tom, left my car, had him take me home, but I was already in the thick of things. 45 minutes later I made it safely home. It was the confluence of bizarre and unrelated events that pushed me into an inescapable vortex forming the perfect storm; all that was left to do was sleep.

Today will be a much better day, I will do nothing, Miriam will come help me at lunch and the perfect storm for me, for today –is over. Who ever considered “help” to be the most difficult word to utter?

 

The Mask

I figured out what this feels like the movie The Mask with Jim Carey. Let me explain…the character, a wuss, finds this mask and miraculously it morphs him into this cartoon character having powers and moves and funny lines he’s always wished for and he saves the day and gets the girl. But like all things too good to be true he must take off the mask and get rid of it and go back to his real life so much the wiser, stronger and he still gets the girl.

As the chemo drugs spread I begin to get a headache or not so much a headache a discomfort starting at the top of my head moving down to my eyes, jaws then moving to my shoulders and chest. Like wearing a tight fitting mask and suit, like the one worn in The Mask. The mask give Jim the alter ego he’s always desired and been afraid to release and hiding behind the mask, whooohooo freedom; in the end knowing he must dig deep and be a different better person.

The chemo mask and suit gives me, all new and exciting powers of super nausea, the need to take many drugs to cope, fatigue, bone pain, anorexia, confusion and a little loss of balance. But in the end I get to take off the mask and suit (finish the chemo) have surgery, 6 more years of a chemo drugs of one type or another, more like a small inconvenience than a tight fitting mask and suit…and hopefully be cancer free.

Amazing with chemo brain I can still think of all this crazy stuff.

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