I need to be brave

Blog what if fail or flyAs I was sitting in the waiting room at chemo yesterday, I read a blog by a fellow cancer patient and amazing person, Nanea Hoffman, in which she talked about being referred to as a warrior. But she said she felt more like the battlefield than the warrior. I couldn’t agree more! Even reading the title and intro to the blog, I was thinking, I am not a warrior. I am not doing anything heroic here. Just like everything else in life I get kudos for, I am just taking one step at a time, “following directions” as Nanea put it.

But I’ve been doing a bit of inner assessment lately, and I have decided that perhaps being the battlefield is not enough. Perhaps I really do need to hit that warrior pose.

At a recent trip to my oncologist, I asked about my prognosis. Funny how it took all these months to get to that question, but it did, and then I only asked it because my daughter wanted to know. So here is the answer. Right now I am cancer free. However, because I was at Stage 3C, there is a 40 percent chance of the cancer reoccurring. That’s why I am undergoing chemotherapy and radiation, to reduce those chances.  My five year survival rate is 72-82 percent. My ten-year survival rate is 55-65 percent. Now those odds are better than even, right? I have more of a chance of surviving than I do of dying, but honestly those are also pretty good odds of dying.

Yesterday evening I was talking to one of my son-in-law’s friends who is studying nursing, and he said that he has full respect for medicine, but that he also believed there was more to it than that, and that our will plays a large part in our healing. And I had to wonder, where is my will in all this? Because I have been feeling awfully defeatist lately.

I am at a point in my life where I just feel kind of lost. I have no idea what the future holds, and no real firm plan for it. I’m just kind of tossing filaments of hope out there and praying something comes back on them. Or to put it more accurately, I am spinning filaments of hope, when what I really need to do is get off my butt and start tossing them. They are not going to reap anything sitting in a pile on my bed.

Physically, I have been on a deep downward spiral. Some of this can be attributed to chemotherapy, for sure. I seem to have blessedly escaped most of what I had feared with chemo, but its effects have been certain. Before I began chemo, I was a vegan, and I will not equivocate on the fact that a vegan diet is established as that which is most likely to prevent and help heal breast cancer. When I asked my oncologist about diet, that was the first thing out of his mouth: there is some evidence that a diet free of animal products is effective in cancer prevention and treatment. But the next thing out of his mouth was, don’t worry about that during chemo. Just eat whatever you are able to eat.

And oddly enough, one of the first things I was unable to eat was most vegan foods. Things that had been the main staples of my diet suddenly made me gag. In my first chemo cycle (AC — adriamycin and cytoxan), I had trouble with a lot of foods. There seemed to be one thing that I’d latch onto and I’d eat that almost exclusively until that too made me gag, and then I’d latch onto something else. These were not vegan foods. There was boiled chicken and rice, well known for nausea abatement after all, then quesadillas, then tuna sandwiches on Beckmann’s Whole Wheat Bread. At one point, I became unable to drink coffee any longer. In the space of a week I threw two full Starbucks iced almond lattes in the garbage after just a couple of sips. At home I switched to tea. Now if you know me at all, you know that coffee has always been my “comfort food.” Such is the power of chemo!

Now, four infusions into my second chemo cycle, Taxol, I am feeling completely different. At this point I am ravenous. I am hungry all the time. I believe I am feeling the effects of the steroid, decadron, that I get with my infusions. Why I would feel it more now I don’t know. I got it in the first cycle, 10 mg by IV with the chemo infusion, then 8 mg a day for three days after. That came to 34 mg every two weeks. Now I only get it with infusion, but I with the Taxol I get infusions every week instead of every two weeks. That means I am getting a total of 20 mg of decadron every two weeks, which is a lot less total, but perhaps it doesn’t have a chance to clear my system as well? It has given me insomnia, and the heebie jeebies, and it has made me want to eat all the time. And I have slipped back into some really negative eating patterns of unhealthy foods in unhealthy quantities, and I even started drinking diet sodas again. It’s a vicious circle, I know. The bad foods and sodas only make you crave more bad foods, regardless of what made you start eating them in the first place.

So I am thinking that with my revived appetite, it might be that I can start eating the vegan foods I used to enjoy. And then maybe I can cut out the bad foods I have been eating.

I initially had a lot of paranoia about foods as well. Actually I had paranoia about everything, because, you know, diminished immune function due to chemo leaves you open to infections. So spring flu season rolled through shortly after I started chemo and I did catch a chest cold, and yes it was worse than the chest cold that everybody else had. It turned into a fever and had to be treated with antibiotics, and then it turned into a cough that hasn’t completely gone away eight weeks later. It does seem I have had some troubles with food. I really couldn’t eat food that had been left out for a long time, or leftovers, without getting quite an upset stomach. But my white blood cell count remained high through the first cycle of chemo because I was getting Neulasta, which boosted white blood cell production higher than normal.

In this second cycle, I no longer get Neulasta because the effect of the Taxol on your immune system is not as drastic. My white blood cell count has continued to fall every week, however. This week it was at 4.5, which I think is low for a normal person, but okay for someone on chemo. Nevertheless, my chemo nurse has told me that I can eat those forbidden vegetables. I’d been told to avoid any fruits or vegetables that can’t be peeled. That took a lot of joy out of a lot of things, like simple sandwiches, never mind actual salads. I substituted doTERRA Terra Greens, a powder which you can mix with water and drink. It wasn’t awful, but you couldn’t put it in a sandwich like lettuce and tomatoes. It didn’t have that crunch, and you couldn’t stick a fork into it, like a salad. It lasted 30 seconds, because you don’t savor it. You get it down. I’m sure of its health benefits, but it’s not a meal.

I know chemo will be over in eight weeks, but I don’t want to spend those eight weeks slipping further down this slippery slope.

The answer to my problems is not all diet, however. It is a battle in my mind, and in my spirit, and in my body. It is a battle against fear, and against this deep down sense that I am not worthy, or just simply that I am not able to achieve success.

I have spent a long time dwelling in my mind and honestly ignoring my spirit and body. My mind demands to be entertained, to be kept busy. I couldn’t stand still in a line at a store without getting out my cell phone to occupy my brain. There are probably a lot of good reasons for this. There are a lot of deep dark holes in my life that my brain has done a darn good job of keeping me out of. Distract and deny. That is perhaps the secret to this “strength” people keep accusing me of possessing. But it is not real strength. Real strength lies in the ability to look into those dark holes and turn on the light.

Even my spiritual practice has rested in my mind. It consisted primarily of reading the Bible and having brief one-way conversations with God. Well, I have pretty much given up the Bible reading at this point. I know there are ways to read it and ways to not read it, but I couldn’t master those. I just kept tripping over things, stopping and saying, “Wait. Is this really what you are like, God?” I have read the Bible many times over the last 40+ years, in many different frames of mind. I have read it and have not seen all the things in it that I cannot avoid now. I will probably go back to it at some point, because it has drawn me all my life, but for now I have put it down. I am thinking perhaps it is time to spend some time allowing God to speak to me, that it is time to still the mind’s incessant need for input and let my spirit be quiet so I can hear. God, who are you? Who am I? What do you want from me? Or, more to the point, God help!

I am thinking it is time to spend more time in my body as well. My strength has been zapped. The first chemo made me feel tired all the time. In this round, I think I might have a little more energy, if only from those darn steroids. I haven’t been able to use it much, though, because my muscles and endurance have suffered and getting them warmed up and going again is no easy thing.

But this I know. Days drift by, and I need to catch them before they have all disappeared and I am left adrift in the mist. I am afraid of the future, and it has created in me a kind of paralysis. I don’t want to move. I think of things do be done and I am filled with a deep lethargy. I have got to break free of this. I need to find a way to support myself and my family, and to fight this battle like a warrior. For this very moment, perhaps the best I can do is utter that prayer: “Help, please.” Show me the way. Give me the strength to walk the path, even when it leads me up the mountain. Help me to not only endure, but to succeed, to conquer the darkness that wants to swallow me.