My CEA level (tumor marker) went up from 20 to 26.1 after a drop last time from 25 to 20. I’m trying very hard not to get really down about this, but I am discouraged. I thought things were going so well, and it’s easy to berate myself for being so optimistic and getting kicked in the butt for it. I know things haven’t gotten worse because of my optimism, but that’s in my head. In my heart, I’m sure I got too cocky and now am getting my just desserts. This head-heart war is tiring.
I know this increase could just be a blip or something, and I’m trying to stay positive, and optimistic, and not worry. But it’s hard not to worry. I won’t have another appointment for a little over 2 weeks, and I know I’m going to fret and worry that whole time. So I have a call in for my PA, who won’t be in until Monday, to see if we can have a discussion about what this may or may not mean. I know my partner and I will worry ourselves silly over this until the next blood test. I have to keep in perspective that my initial CEA was over 70 when I began treatment. I will not panic about this. I will not panic; I will not panic. Okay, maybe for a minute or two.
In the meantime, I intend to eat some chocolate; chocolate is medicine and will make me feel better. 🙂
I was watching a TV show the other night where one of the characters went to a relative’s funeral and was the only one who showed up. I remember thinking how sad that was. Evidently the relative was a bitter, angry, nasty, person and had alienated the rest of the family. And that got me thinking. (Don’t you just love it when a word, a phrase, a TV episode, triggers a blog post?)
I sometimes wonder what life will be like without me in it. I know the world won’t stop. There is just so much I still want to do, so I have no intention of dying any time soon, but I’m curious about what it will be like. Will my dogs miss me (assuming I die before they do)? Will my partner find someone else? And how long will my spirit hang around? Will anyone know I’m there?
I don’t think I’m afraid of dying. I am afraid of what I’ll miss. Is that the same thing? I think I’m more curious than afraid.
Funerals are for the living to celebrate the life of the one who died. I know they can be sad occasions, but I think they should be celebrations. A time to remember. And as long as someone remembers the dead, they are not truly dead.
Until my death arrives, I think I’ll hang around and live the best life I can.
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.
I have been feeling rage and despair for the last couple of days along with a sense of urgency to make this Xmas special because there’s a chance it could be my last one in this life. My emotions are still riding a roller coaster from the depths of blackness to feeling as if I will beat this. I can actually go for hours at a time without even thinking about cancer, and there are times when that’s all I think about. I don’t like tearing up for no reason or because of some sappy TV commercial. Then again, it could just be the time of year. But I still feel as if my diagnosis is totally unfair – I still have a lot of living to do.
Intellectually, I know that what I’m feeling is normal and it’s okay to feel it. I sometimes think I will be one of the small percentage that survive; and other times I’m sure I won’t be. The odds are against me, but then I have to remember all the times I have fallen into that small percentage of people to have some side effect, or something. For example; I tried the contact lenses that were supposed to reshape the cornea. I wore them every night, and within a week, I no longer had to wear contacts or glasses during the day. That was a liberating feeling! But within a few months, my eyes began to revert back to the way they were even though I continued to wear the special contacts overnight. My eye doctor said, no problem, we’ll just change the Rx and you’ll be fine. Only a very tiny percentage of patients have it happen again. Well, guess who was in that tiny percentage? And there have been other instances like that.
Here’s hoping that my being in that small percentage will work for me this time instead of against me.
There are times when I wake up at night and wonder why me? I know that isn’t a good question and that there is no answer, but I ask it anyway. All I wanted was to be able to enjoy a few years of retirement doing something I enjoyed instead of toiling away to earn a living at jobs that were mostly unsatisfying and soul-crushing. I was good at my jobs, but grew bored quickly; then the jobs became a chore. I have been working since I was 16 – not always full-time – but I’m weary of working. Bone tired. So why can’t I enjoy a few years of leisure to compensate?
The middle of the night is probably not the best time for philosophical meanderings for me. I only sleep for 2 or 3 hours at a time before waking. Very rarely do I sleep for solid chunks of 4 or more hours. Part of this is because the dogs tend to wake me when they want to go out. Since one is getting elderly, she’s 12, and the other has a history of ‘marking’, if they want to go out, I let them out. What’s weird is that if Steve asks them if they want to go out, they just nestle further into the bed covers (yes, they both sleep in bed with us!) but as soon as I ask the same question, they’re running for the doggie door, which is closed off at night.
Lots of things go through my brain in the middle of the night. Things like will it bother me when I lose my hair? How long do I really have of a quality life before the cancer kills me? It isn’t fair that I have to deal with this; I want the opportunity to dance at my grandchildrens’ weddings. I want time to finish writing all the stories in my head; I want time to be able to go to all the places I haven’t been yet – or at least some of them.
I don’t know how much time I have; I may not know for quite some time. Everything hinges on how well the chemo works. And I’m not sure whether or not I want to be on chemo for the next several years.
Then I tell myself that nobody really knows how long they have to be on this earth. So I will try to make the most of whatever time I have left. I will continue to be grateful for every day I open my eyes on this beautiful world we live in; I will continue to be grateful for family and friends; I will continue to be grateful for whatever opportunities I have to have fun. And I will do these things for as long as I am able.
We all know them; those people who are always whining about something. Or talking about how unlucky they are. Or extolling the virtues of having nothing good happen to them. I have a friend or two like that. They wear me down if I listen to them too long. And, I’ll admit it, there are times I want to slap the whine right out of them. I want to rant and jump up and down on their heads and tell them how good they have it compared to some other people I know. I don’t know what makes some people so negative while others are always positive no matter what happens.
I have to think about my own life and how negative I used to be. When I hear my friends whining about inconsequential things, I think back to when I was younger – was a a whiner like that? And the answer is, yes, I probably was. I felt so beaten down by my life that I couldn’t see anything positive. I did manage to change how I thought, and I try to help others to become more positive. But I forgot that in order for someone to change, s/he has to first realize there is a reason to change, and then has to want to change. There are people who are perfectly happy being miserable – my mother was one of those. So they are not going to change.
I have one friend, I’ll call her Karen, who is going through a difficult time right now. She has cancer, no job, and no health insurance. She could so easily fall into the pity pot and whine and cry; but she didn’t. She set out to find how she could get her life saving surgery and gathered up an impressive support network. I know she will be fine.
I have another friend, I’ll call her Kathy, who has a wonderful life. She has a good job, a strong family connection, and friends all over the world. But she is constantly whining about how she can’t find a good man; about how the only luck she ever has is bad luck; and how some of these bad things ‘could only happen’ to her. She doesn’t really believe she has any worth, and she will continue to attract negative events and people to her.
I truly believe we teach people who to treat us by how we treat ourselves. Karen has friends who would do anything for her; Kathy has friends who will continue to use and abuse her. The only difference between these two people is their attitude about life and their expectations about how life will treat them.
I saw a segment on TV this morning that started my train of thought going. The segment was on the fact that those who express their anger live, on average, two years longer than those who bottle it up. I know that bottling up anger is bad for your heart, and for your health in general. I also know that years of suppressing anger can lead to a person exploding – i.e. ‘going postal’ as it was termed. That explosion can be catastrophic for not only the person exploding, but also those around him/her.
I was taught from an early age that expressing anger is not okay. We, as women, are supposed to just go along with whatever happens because it isn’t ‘ladylike’ to get angry. So we bottle up the anger and suddenly, sooner or later, we find ourselves depressed, or unhappy with our lives, or suicidal. Men are taught that expressing anger isn’t okay because expressing any emotion is not ‘manly’. So men bottle up their anger until they also find themselves unhappy, depressed, or attacking their loved ones or strangers.
I wonder if this is why we have mass shootings. Do these people just explode from bottling everything up for so long? Have they been bullied? Do they not know how to express what they are feeling? I don’t know the answer, but I do know that we all should learn how to express our feelings in a constructive way.
I don’t get angry very often; I’m an easygoing kind of person. But when I do get angry, I tend to spew words all over the place. I don’t yell; I don’t even raise my voice. The words are preceeded by a deadly calm quiet. My ex and my kids never knew when I would reach my limit, and it happens maybe once in ten or so years, so they never learned the warning signs.
Other people I know tend to rant and rave and jump up and down for hours when they get angry. And some people I know don’t express it at all. We need to teach our kids that expressing emotions is healthy and necessary, because if we don’t tell people how we feel, how are they supposed to know? I’m not advocating that we begin emoting all over the place, but to learn what and when it is appropriate to express ourselves and when it is necessary to just walk away.