Brain Fog and Other Interesting Things

So here I am the day after chemo, and the side effects are already starting. For whatever reason, my brain seems to be functioning worse than before. I’m having a hard time concentrating – harder than usual. I can’t read a long paragraph without losing the thread half way through. And forget trying to find the right word when I’m speaking or writing. I often have to leave a blank when writing and go back to it. I hate that part most of all. I’m a language/grammar/literature nerd, and not being able to read and write without putting a lot of effort into it bums me out. I used to be able to hammer out paragraphs and paragraphs of fiction in one sitting. Without having to edit much. Now, I can’t even write one paragraph for my blog without slowing way down and re-reading every word several times before hitting the publish button.

The depression is also hitting hard this evening. I know it’s the chemo and the steroids – much of the steroids are the extra ones I’ve had to take along with the antibiotics for the aspiration pneumonia I suffered a week ago. I’m still taking oral antibiotics through Saturday, and have one more day of the steroids. The good news is that my lungs have cleared, and I’m not coughing up a bunch of junk any more. And the wheezing has stopped, so no more giggling at the weird sounds coming from my chest. Spud appreciates that too as the noises seemed to disturb him. His responses were funny and kept me giggling so hard some nights I kept myself awake.

Other side effects, like the numbness in my face and the mucous membrane soreness and pain aren’t as bad because my dose of Taxol was reduced a little. But I’m still having them. I can put up with all of that as long as I know the drugs are doing what they’re supposed to do. And so far they are.

There have been some adjustments made in the other meds I’m taking – my diuretic was increased because the Avastin was causing my blood pressure to start creeping upwards, and the medication for my acid reflux has been doubled. I notice the reflux is worse on chemo day and the day after and then gets better. But I’m still having to sleep sitting up, which doesn’t make for a very restful sleep. I wake up dragging, and even napping during the day doesn’t help. I’m hoping the increase in the meds will help.

So basically I’m still here, and rapidly approaching my one year anniversary of diagnosis. One part of me still can’t believe I have lung cancer. And there are days when I don’t want to see or read anything about lung cancer. But I’m a researcher by nature, and I can’t resist digging deeper when I see an article about a new trial, or a new treatment, or a new diagnostic test. Sometimes I feel detached from myself and my diagnosis, as if it’s happening to someone else. I have since learned that there are components of PTSD associated with a diagnosis of lung cancer, so that would explain the detachment. And it’s something I will explore further at some point. But for now, I’m just doing the best I can to be here in the now and take one day at a time. And I suppose that’s all anyone ever does.

Onward and upward!

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Death is Personal

Every time I read of someone in my extended cancer family dying, I take it personally. And it hurts whether I knew them or not. So many of them I met through the blogosphere or Facebook and have not met in person. But I still feel I know them, and we support each other in our fight for freedom. And each death reminds me of my own mortality.

I know that each person with lung cancer is different and will respond differently to different drugs. And I know what the statistics show. I try not to focus on statistics, but it’s hard not to. I instead try to focus on the survivors who have beat the odds – those who have survived 5,10 years or more – and those living with NED (No Evidence of Disease). Lung cancer isn’t curable; I know that. But I want to know why isn’t it? What is it about this disease that makes it so aggressive and so incurable?

I read scientific studies; I read clinical trial results hoping for the breakthrough treatment that will knock lung cancer on its ass. I also read stories of ‘cures’ if I will only buy whatever the supplement or diet du jour is. And I get angry at the people that are touting these ‘cures’ and giving false hope to people living with lung cancer and desperate for a cure when there isn’t one. I have to admit that every time I see a new ‘cure’, I do a search for any scientific studies on whatever ‘it’ is; most of the time there are none. But once in a while, there are promising studies, and then they don’t seem to go anywhere. And I wonder why. What happened that the research didn’t continue when the early results showed such promise. Did funding run out? Was there a catastrophe with the research itself?

There is no lack of conspiracy theories to explain why we have no cure today. Many of these theories claim there is a cure, but the Government, or the drug companies, or someone out there, has decided they want people to die, or they can’t make money from the ‘cure’, or so many other ridiculous reasons.

Lung cancer can become resistant to the chemotherapeutic agents used as first line treatment. And even to the second line treatment. The most encouraging research now seems to be targeted therapy and immunotherapy. Targeted therapy is for a specific mutation, and immunotherapy is a way to trick the body’s immune system into attacking the cancer cells, and only the cancer cells. This is different than chemo where all fast growing cells are attacked, which is why there are GI side effects, and loss of hair, etc. But even these aren’t cures, and lung cancer can develop immunity to the treatment.

So for now I will just keep going. I will have blood work and another CT scan on Tuesday and will meet with my oncologist on Wednesday. And then we’ll see where we go from here. In the meantime, I will continue living with an attitude of gratitude as much as possible.

 

Life Defined by Cancer

For the last week or so, I have woken up during the night with hiccups. I have no idea why. Last night was particularly bad, though, as I woke up every hour or so. But during one of those ‘awake’ moments, I had a realization; for the past four months, my life has been defined by my cancer.

Most of my waking moments have been spent dealing with things having to do with cancer; insurance companies, appointments, chemotherapy, chemo side effects, and on and on. Fatigue and other side effects have severely curtailed the activities I thought I would be enjoying in my retirement. I spend time reading blogs of other cancer patients; reading research papers; looking for more promising research. And I have decided that I’m sick of allowing cancer to define my life. I feel as if I’m waking up from a dazed existence that began with those fateful words, ‘you have cancer’, and have continued ever since. No more. I’m taking back my life – I should have done this a while ago but needed the realization of what’s happening to be able to redefine myself.

Cancer isn’t disappearing from my life any time soon. It will always be there in some form, even when I show no evidence of disease. Cancer is insidious and can reappear at any time, or spread somewhere else. What matters now is that I intend to enjoy life more and put cancer on the back burner for now. I will deal with it as I have to, but I no longer want it to define me; I will define it. I have to make some allowances for fatigue, chemo brain, nausea, etc., but I will no longer make them my focus. They are there and will be there for a while. My focus is now on me and my life and my activities. I’m outlining my days based on what I wanted to do for my retirement regardless of what else is going on. I will write. I will go out and take pictures. I will play with our dogs. I will spend time with my partner. I will work in the yard and enjoy my flowers – when I have them. I will define my own life.

 

Frustration

I’m tired of being tired and not feeling well. Yesterday was particularly bad. I couldn’t seem to stay awake very long, and I felt like crap. I woke in the middle of the night with cramps and nausea. Taking one of my anti-nausea pills helped with the nausea but not with the cramps. I felt as if I had eaten ground glass and it was eating me from the inside out.

Chemotherapy attacks rapidly multiplying cells, which include not only the cancer cells, but hair, nails, and mucus membrane, which is what lines the gastro-intestinal tract. That’s why nausea, diarrhea, vomiting, and hair loss are often side effects of chemotherapy. My hair and nails are fine at the moment, but my GI tract isn’t. I have three different anti-nausea pills; one for mild, one for moderate, and one for severe.

The side effects are cumulative, and this is the third week of three for this drug combination. I’ve noticed that Wednesday into Thursday are when the side effects are at their worst. And yesterday was the worst it has been so far; not counting the first round of the combination that knocked me on my butt. I won’t be getting chemo next week but will start another 3-week course on Monday the 23rd after more blood work and another CT scan.

Today, more hair came out. It seems to be a day of hair coming out and then nothing for a week or so. I’m thinking my good shampoo and conditioner might have something to do with my hair still being there. Who knows? But at least today my GI tract has calmed down a bit, and I stayed awake all day.

Next week should be better.