Just a Touch of Dread

Addendum to this post: I am not talking about stopping chemo altogether, but the most toxic agent. I'm sorry that I worried you people. Although there may come a day when I do talk about it, so be ready.

This past year, a couple of cancer blog authors that I have followed have died, one just a few days ago.  These young women were in their primes (26 & 31 years old) but handled their cancer in very different ways.

One who had adenocarcinoma (my kind of cancer) of the esophagus, underwent surgeries and chemo, but once she had a recurrence, decided to eschew further chemotherapy. She decided to eat healthily and exercise instead knowing that it probably wouldn’t make a difference. She died about six months after her recurrence was discovered and spent the last month of her life on an island in Maine with family and close friends. She died peacefully in a beautiful place. She had survived two years since her initial diagnosis.

The other who had Hodgkin’s Lymphoma, underwent initial chemo and then a marrow transplant. She continued to seek treatment, after treatment, after increasingly toxic treatment. The photos of her on her blog showed a person who looked almost nothing like the person who started the blog. She was bald and swollen; she had bleeding out of her skin and horrible thrush and mouth sores. She spent much of her last months in the hospital. Finally, her body just gave out. Her husband said she died peacefully, but in her last posts she talked about suffering from major pain and panic attacks. She had survived four years since her diagnosis.

Each of these deaths left me a bit stunned, heavy-hearted, deeply sad … and with just a touch of dread. It’s becoming time for me to make some treatment choices and I ask myself, which person would I rather be:  the one who lives four years but suffers horribly and spends much of their time in the care of strangers, or the one who lived only two, but is surrounded by home and family and beauty?

We, the cancer afflicted, are encouraged to fight, fight, fight and that’s all well and good if you have a chance of winning. But I don’t, and if my suffering serves no purpose but to add to medical statistics, then fighting to the end…well…seems kind of stupid to me.

Perhaps I am not as tolerant or tough as I once thought. The truth is, I hate, hate, HATE how I feel on this tough chemo.  It could be vastly worse, I know, but I’m not sure I want to tolerate it anymore. 

One or Two?

The 2nd leg of my first round of new chemo has gone very smoothly. Other than a headache and chilling through the weekend, I really have had no other symptoms. I have energy and although my appetite has not returned completely, it is on its way. I am very thankful for this, but it has me thinking. Do I want to continue my current chemo cocktail?

My new drug regimen for the 1st leg of each round of chemo is Avastin - an anti-angiogenesis targeted therapy, Gemzar - a 2nd round NSCLC chemo agent, and Carboplatin - a platinum-based drug that causes all sorts of, excuse me, shitty, shitty side effects. Lethargy, relentless nausea, vomiting, neuropathy, shortness of breath, heart palpitations, chest pains, and chemo brain, among others. The Gemzar/Carbo combo is popular in Europe and it seems to be used more in the US recently. I had the Carboplatin at the very beginning of my chemo treatment in 2011 and it was difficult. The effects from it this 2nd go around have been worse, so I'm beginning to wonder if the benefits of the Carboplatin are worth the week-long feeling that I could puke up my shoes at any minute.

I looked up some statistics and it seems that, although there is little data regarding Gemzar alone, Gemzar with Carboplatin makes little difference in survival times when compared to other chemo agents. However, it DOES make a difference in how people feel while they are surviving. Because it is so harsh, people feel better without the Carboplatin (surprise, surprise).

So I'm taking this and next week to consider the real possibility that I'm done with the Gemzar/Carbo mix or whether I'm willing to sacrifice one week of every three for an extra 1.6 months.

Sister Cranky Pants: Depression with Cancer

As much as I'd like to deny it, with cancer, comes depression. Some of it from the anger, frustration, fear, etc. that you get from simply having the disease, some of it comes from physiological changes due to chemotherapy, and some from the effects of the chemotherapy.

I have found that I have been able to handle the disease-related depression much more easily than that brought on by the effects of the chemotherapy.

I think that part of the reason for this is because my disease has only been nominally symptomatic in the last three years. I’ve really only had bone trouble. Other than pain from that, it really hasn’t caused me real discomfort. The chemotherapy on the other hand, has been a giant pain in the infused ass.

I feel nauseated. I have a headache. I feel bloated and disgusting. My brain has trouble keeping up with conversation. As a result, I get cranky when I can’t understand what someone is trying to say to me. So I have a group of people, especially KB, who are doing all these things to help me out and I respond with cranky faces and barbed retorts. When I see the looks on their faces,  I end up feeling terribly guilty. I end up feeling like I don’t deserve to be treated well, that I should just be rejected by all of humankind and left alone to wither away, or barf up my guts, whichever comes first. I feel like rolling up into the fetal position and disappearing, and that my disappearing would be the best thing to happen for everyone.

Complete self-pity, I know.

Which makes me loath myself even more.

It’s a horrible circle that I have to talk myself out of. I also know that I have to control my nastiness. Some people have told me that it’s understandable, that I should take it easy on myself, etc. But I have always believed that you can’t use cancer as an excuse to be a douche bag, and I still believe that. I still have self-control and choice and I need to exercise it, despite how I feel.

It's time to give Sister a swift kick in the Cranky Pants.

Second Line Treatment

Last Friday was the first day of my 2^nd line treatment. I was hoping to go into it feeling emotionally strong and physically healthy, but due to some familial stressors and my recent hip surgery, this isn’t the way things went down.

I went into this dragging my emotional feet. I did NOT want to take these heavy-duty drugs again that compromise my mental state and make me feel utterly crappy. Nonetheless, last Friday, I was in the infusion chair, ready to receive the treatment that the doctor believes will give me two to three more years of progression-free existence. When you break out in a rash, have rampant fatigue, and hate the sight, smell and thought of food, thinking, “2-3 years. 2-3 years. 2-3 years,” is not necessarily the motivator you’d think it would be.

I’m several days out from my infusion and I still feel like crap.

I’m guessing that once I’m done with it and (if) I get those 2-3 years, I’ll think it’s worth it. At this moment, I’m not so sure.

**For family & friends who might be worrying. Don't. This is just an expression of my feelings at this precise moment. 

Affirmations Schmaffirmations

 

Today was my last of 10 radiation treatments for cancer that is encroaching on one of my sacral nerves and causing some really lousy sciatica-type pain. Thankfully, it has helped to a degree, although I’m kind of worn out by it.

Anyway, in the inner waiting area at the radiology clinic, there sits a basket that, overseen by a paper smiley face on a stick, is full of small sheets of paper on which are typed a variety of life-affirming notes – what we now call ‘affirmations’.

 

Being a self-avowed cancer curmudgeon, I don’t find affirmations of any kind very helpful. I don’t find them helpful because I don’t find them honest.

Now I understand that affirmations help people.  A lot of people, obviously, or we wouldn’t be using them so much (they even come in our chocolate candies – opened a dove chocolate square lately? Doesn’t velvety chocolate say all it needs to?).  And if they help you, more power to you.

But sometimes, they are out-and-out lies.

 

Really? There is no one and has been no person on this planet to whom only good things have happened. For one thing, random shit happens to people. All people. It just does. Secondly, none of us are always good people. Sometimes, we say mean things, we are impatient with our children, we slap our dogs on their noses, we gossip, we lie, we take the last brownie when we know it’s our spouses favorite, we operate out of self-interest. And some people do much, MUCH worse things. The consequence of doing some of those things is that bad things happen. We’re impatient with our teenager and they yell and slam doors. We eat the last brownie and our spouse makes a snarky comment about the size of our butt. NO ONE deserves only good things in their life. No one.  Because, frankly, we don’t DO only good things in our lives.

 

 The devil is in the details. Not many of us will kill our neighbor’s annoying cat, but many will lie to our neighbors about knowing the location of said cat if it turns up missing. It’s the small stuff that does matter because it’s accumulative. It is the building blocks of our everyday lives, of our everyday selves. We are our actions.

So, maybe instead of believing that we should always feel good and have only good in our lives, we should feel a little badly about the bad stuff that we do and expect the bad stuff that we get in return. If we engaged in a little honest reflection and de-affirmation from time-to-time, perhaps we would become people who don’t need our chocolates to tell us how great we are what we deserve out of life.