Right now, I walk a weird line. Having written a blog that is based on humor, and now finding myself in a very unfunny place, what do I do? Do I keep writing? Do I wait until I can make what I'm experiencing amusing for my readers? Do I hope for the best, or do I just let those of you who are now invested in my story know what life is like for me, even if it's dreary and complaining?
My plan from the beginning was to chronicle breast cancer in a non-threatening and amusing way, so that when others got it and did what I did - google for first-hand stories - they would find something not so scary. Because, early treatment really isn't scary and it isn't like the movies or TV with all that barfing and crying. All that seemed to be out there when I was diagnosed were blogs of people who died, or those of people who were still writing (and complaining) about cancer ten years past their treatment, making it seem like the worst thing that could happen (which for them it may be, but it wasn't for me and I imagine it isn't for everybody). I felt like it would be a blip in my life and then over; I'd be annoyed at having one boob and that would be it. I wanted others to know that people like me are out there -that we had cancer and let it go and that is okay, we don't have to run pink races or be activists or live a life defined by one bad experience. Since I couldn't find a blog like that - I would write it.
As my treatment ended and I had my 3 month check-up post-therapy I had decided to say good-bye here and close up shop. That post is half written, lying around on my computer somewhere.
Because of course, I never finished it due to the discovery of mets to my liver. I now would not be one for whom life would go on, spent with occasional annoyance at my boob-less state but mostly just enjoying my family and career. Instead, I would have cancer material for the rest of my very short life. Cancer could never be the temporary, nerve-wracking yet interesting life experience that I had thought it would be. It was going to kill me.
And, while I could still have some laughs along the way, it was going to get grim. I mean, death isn't always funny if you aren't slipping on a banana peel. But I decided to write about it up to the end, or as close to the end as I could get. Every story needs an ending and while we know mine, we don't know the details. So I decided to continue along as far as I could get.
And so here I am, not close to death, I don't think, but also in a very unfunny place right now. Not as unfunny as c-diff, which is probably the un-funniest experience of my life, but my life right now is pretty miserable.
Where I am and what I'm doing is sleeping.
All the time.
18 hours a day, at least. I sleep like my cat, who is in kitty heaven having me in bed continually. I sleep so much I am only hoping I can finish typing this before I go back to bed.
Now, if you follow me on facebook, you may have seen posts or likes, but they don't give much of an indication of what I'm really doing, all of the time. Which is lying in bed, and not only lying but also sleeping. I wake up, have to pee, which wears me out so much I need another six hours. I wake up, walk into the living room to see who is around, which is so exhausting I need to go back and sleep for two more. Because family is important, and food is important, I do get up and eat, and stay up after that. My body somehow adjusts itself to stay awake a few hours at night. But that's all.
Just a month or so ago I had energy. I was creating pendants (don't buy one) and was excited about life and starting a little business that could help my son with minor college expenses (very minor, like a Starbucks Mocha, but still...). I knew I was sick, and felt sick compared to when I was healthy - but life was okay. I enjoyed getting up and making the jewelry and picking my son up from school. I was happy sitting by my computer, watching my hummingbirds feed from a feeder I bought, from nectar I made, and while my life was restricted, those little things were joyful. I wasn't able to cook dinner for my family - standing for an hour or more was hard and I have zero appetite and believe it or not, when nothing sounds good you don't want to cook. So, my husband has taken that job over - but I could make myself a bagel in the morning. I read the paper, as I have since I was six. I pick my son up from school. I went with a friend to a show.
A month ago, I felt like I was getting better and that I'd soon be able to grocery shop again, cook again, live a normal life again. The cancer was stable, I'd radiated it, I had time, I thought. It was getting easier to walk, to stand, to breathe. I told my husband that I thought he'd get a break, that I'd feel good enough to do chores and be normal soon. One day, I even cleaned the entire living room - dusted, vacuumed, wiped the leather chair, stuff I hadn't done in a year. I invited people for the holidays, made gifts, thought ahead. Life was small but okay and I felt like it was going to get better. I knew it wasn't forever, but I thought I might have some time before cancer grew back and I became ill again.
Then about two weeks ago, I crashed. I got out of bed at about 10:30 and still felt exhausted, my legs like rubber. I drank half a cup of coffee, skimmed the paper, and decided to go back to bed. It was just too early. I slept until 1:30 and got up, checked on the dogs, sat in the dining room where the sunlight and computer is, and then 30 minutes later, went back to bed and slept some more. I slept until 4:30 or 5:00. I woke up long enough to eat dinner with my family, check facebook, and then nap until 8:30 pm. My husband woke me to watch TV, and I stayed awake the longest period of that day - until 11:00. Then I went right back to sleep. I'd been awake maybe 6 hours that day.
Okay, so this has happened before. I know what this is, (although not why) and I call it my "downer day." Tomorrow, I thought, I'll be tired but better, and the next day I'll be a little weaker but be fine, and the day after I'll be normal. For me, anyway.
But that hasn't happened. I'm still sleeping all day. At first, I thought I was getting a cold, like my son had, but that isn't the case. I am just completely and utterly fatigued, even when awake, which is just brief periods a day. During those minutes, I might look at facebook or check my email but it's not long until my eyes start to close. My legs shake as I walk; they feel like jello and I am terribly achy and weak. Getting dressed seems difficult to the point of impossible, and I spend the day in PJs, carrying a blanket around like a ghost because I'm cold. I can't shower as I can't stand on these spaghetti legs, so I take a bath, but not daily. It's too much effort to fill the tub, get the temperature right, and I'm afraid I'll fall asleep in the middle and flood my house. I can't come up with words, talking is difficult, and even typing - I make many mistakes. This post has been days in the writing.
My doctor had prescribed me ritalin for fatigue. That was for normal "cancer" fatigue - and the drug worked fine for that. I'd take one occassionally when I'd start to feel sleepy in the afternoon and had something to do, and I'd wake up enough to do whatever it was. Now I take two and sleep for four more hours. I'm not even taking pain medicine right now, I'm too tired, too often sleeping. I should be going through withdrawal, yes? I've been on pain meds for three years. If so, I'm just sleeping through it. This is fatigue unlike any I have ever experienced and it's now lasted two weeks. I've slept for two weeks pretty much straight. It's time to confess. Because, what if I don't recover? What if this is it? What if my life is like this now and won't get any better?
It's not funny. I'm pissed. I have things to do. The holidays are coming. A grandbaby is coming. I have accepted, quite gracefully I might add, that my life is going to be cut short. But I wasn't planning to sleep what's left of it away. I figured I'd get sick, the cancer would grow, overwhelm my body, I'd have hospice in, and then turn up the morphine. Bye. There was nothing in any book I read that said I had to sleep 18 hour days for weeks first.
Supposedly, the cancer in my body is quiet so I don't know why this is happening. I suppose it could be a form of anemia. My red cell count is about 11 which is good for me, normal is about 12. My doctor does a transfusion when I get down to 8. But maybe there is a form I don't know about, or maybe something else is going on in my blood. I don't see him until December, however and even then, what if nothing unusual shows up? And I'm still like this?
Fatigue is common in cancer patients, I read, due to treatments, cell death, etc. But I have been doing this for four years, there is nothing new. I've been fatigued. This is a whole new level of weakness and fatigue and I'm nervous that it won't improve.
When they say cancer is like riding a rollercoaster, they aren't kidding. At the end of July, still on Gemzar, I was able to drive to Carson City to see my sick father (and get a speeding ticket) and, while very tired, arrange for his care. In early August, I had gamma knife type radiation and fatigue was one of the side effects, but it was nothing like this. By September and October, off Gemzar, I was feeling so good I was planning for spring, imagining college trips, my son's graduation, little doubt that I'd be there. I'd bought myself enough time with the radiation and perjeta, I figured. Now, I can't get to my front door. Now, I can't even stay awake. I can't remember what I've done or said I'd do, and confusion reigns.
All I know is my bed is there with me and my cat in it. My confused husband every once in a while peeks in, to see if I'm breathing, and then leaves.
I just hope this rollercoaster goes on the upswing again. Because, I'd be really mad if I wasn't so damn exhausted.
Now I'm going back to sleep.
If you paid for a pendant and want your money back, I'm happy to refund you, just email me. A few are made but haven't been shipped because I got confused so I will do that ASAP. I still have a folder of orders that I am hoping I can complete as I enjoy doing them very much. I keep hoping that I will will get back to normal. Maybe tomorrow I'll wake up and stay awake. But I don't know that I will, it's starting to make me very, very nervous that I might have to sleep until the sleep is permanent.
Pain and Frustration
1 week ago