Thursday, November 28, 2013

Happy Thanksgiving

I am so grateful that I am around to celebrate this holiday again.  I'm thankful for my family and friends, who have been so supportive. I'm indebted to my medical team: nurses, doctors, assistants - who keep me going and are so kind and caring.   I appreciate all of my blog readers, facebook followers, whose comments and posts keep me going.  On those days I'm so sick I can barely move, one of my first thoughts is you all.  Who knew you'd be integrated into my life the way you have become?

I hope you each has a wonderful Thanksgiving in your own way, with friends and family, football and turkey.  But if this is not your holiday, if you are reading this from another country, than just take a moment today to be grateful for what you do have - as we all should ever day.  No matter how difficult life can be, there is always one good thing, whether it is a purring cat, the way sunlight catches on a leaf, or a hot shower with a delicious soap.  The simple things, ultimately, can keep you going.

Happy Thanksgiving,



(PS:  Don't forget to vote for me on the Best Blog Contest.  Due to technical problems, people could not vote for me for a week so we have some ground to make up! )

Wednesday, November 27, 2013

Healthline's "Best Blog Contest" Begins Again

Last year, I won this contest by the skin of my nose.  To be honest, I didn't think I would be around to enter it this year.  Remarkably, I am still here, thanks to Perjeta and Gamma Knife radiation.

I had thought, when told I was nominated again, that I may not do it.  I dislike the nagging, the reminding, the problems.  I don't really have much of a competitive spirit.  I get sick too often to even vote for myself everyday and wouldn't that be guilt-full if I lost by one vote?

But I asked my friends who post on facebook, and to a person, they said to do it again.  And, I can't turn down a potential $1,000 prize for my son's college education.  He's a senior, he graduates THIS YEAR!   So, I've decided to participate again.

You can vote right here:  Click on but doctor i hate pink. (I don't know why it's in lower case this year.)  You will need either a facebook or twitter account to log in to vote.  They use your facebook account to post that you voted for me, but you can click the "x" if you want to keep it a secret. They will not spam you throughout the year, you don't need to worry about giving them access.  Better yet, share it and ask your friends to vote for me too.  I'm currently in 3rd place and my dream would be to get so far ahead so quickly that I can ease up on the reminders.

This month I will have three giveaways for you, in honor of the month of Thanks and the Season of Giving.   So, most of my upcoming posts will be about you all winning prizes but I do have one or two written about my past and how I came to be "me."  I think it may be time to "go there."

Now, I have chemo today so I must get ready.  Whether I win this contest or not, the fact that I've lived to see it come around again is truly a gift.  I wish everybody who is participating good-luck and good cheer from me.

Thursday, November 14, 2013

"Take a breath.....Hold it.....Breathe Out...."

You all probably recognize the title as what a CT machine says to you  in a sing-song way when you are laying there on the scanner, warmth wearing off the blankets,  curly cue cord of the IV in your arm ready for contrast to be pushed into you remotely.

I finally got frustrated at my endless night of sleep, listened to my family, and called my doctor a few days ago, telling him I was not able to wake up.  When I made the call, I had gotten out of bed, struggled to the dining table, and was breathless, which his wonderful assistant could hear over the phone.  I told her my big problem was fatigue but she seemed concerned about the breathlessness and hey, at the time, I was really breathless, she was right.  My body had been in bed for more than a week straight, moving and talking on the phone was a struggle, and I had to pause between every word to get air.

Naturally,  they called me into the oncology office to get my blood checked.  Anemia made the most sense. Getting there was a hard task with my exhaustion, particularly getting dressed. Fortunately, my son has not started his new job yet and was able to drive me.   I was afraid I couldn't stay awake on the road, and I felt too weak to drive myself.  When my blood came back as being non-anemic, even in the ranges of you normal people, the doctor scratched his head and sent me off for a chest X-Ray.

Okay, he wasn't actually there so I didn't see him scratch, I'm just assuming.

That X-Ray also came out normal.

I was willing to leave it there. I'm feeling a bit better, awake more; I was up for hours yesterday, and although I have been availing myself of ritalin - it is working unlike before.  I got up at a normal time today, much to my cat's dismay. I'm still lacking in energy in an extreme way, and I feel weak,  but am not sleeping all day. Then his assistant called and left a message, saying the doctor wanted a scan.

In my head, I was thinking maybe a PET so I was okay with that.  To be honest, if anything is wrong with me cancer-wise, it seems like it would be my brain going wonky and wanting to sleep, and I thought maybe a PET would show brain mets.  I was not thinking lung, and I still am not.

But just now, I got the call for the appointment and it is for a chest CT.  With contrast.

This makes maybe my 50th scan and that is not an exaggeration, nor an exact count.  It could even be more considering all the surgeries, radiation, etc, that I've had them for.

I am just not sure I can do another one.  I just ..... can't. They aren't scary or hurtful and they don't make me nervous or anything.  But I'm tired of this.  I'm sick of being in machines.  I'm sick of having to dress, get in the car, go wait in a waiting room, change, get on a machine, little poke, take a breath, hold it, breathe out, okay, here comes the contrast you might feel warmth down there, breathe in hold it breathe out, okay you are done, drink lots of water and no caffeine, get dressed, drive back many times is one woman expected to do this?

Maybe cancer has moved into my lungs.  Or brain.  Maybe I just had some virus.  I'm getting up again, still tired but not sleeping all day.  Maybe it was just a "thing."  Maybe, imaginatively, my body is practicing to die, maybe, practically, the infusions are affecting me, maybe ....maybe.... I don't know.  But I do know that whatever it is, I cannot do one. more. test.  The doctor hasn't seen me.   I am tired of being doctored by machine.   I don't want to do this and I feel like a 3 year old stamping her feet.  I CAN'T DO THIS AGAIN!!!!!

I called and talked to my doctor's assistant, told her I was better and didn't feel like I wanted to do a CT, and said unless the doctor had a good reason for it, I was going to cancel my appointment.  She said she'd ask him and let me know.  She did, he said that he'd only ordered it in case the chest x-ray missed something, I know my body best, and so the CT is cancelled.

The lesson for me is:  DO NOT CALL MY DOCTOR if I feel sick but am not in danger of imminent death. My problem was sleeping, and it got translated into breathlessness, which is understandable because that's what they could hear, but then I was going down the wrong road.

Which barely matters, because all roads lead one place:  machines.   And, right now, I am so over CT machines.  So so over them....

Breathe Out........

Oh, and you are welcome insurance company, I just saved you $7,000.00.

Monday, November 11, 2013

Serious Fatigue

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.