Saturday, December 14, 2013

And the MedSystem Winners are...


Announcing the winners of the MedSystem Center....Top three gets one!

Drumroll please.....

  1. Kimlopark December 5, 2013 at 6:54 PM
  2. ~Dawn~ December 12, 2013 at 10:09 AM
  3. SheSewChic December 11, 2013 at 1:17 PM
If any of these three do not contact me within 7 days, I will select from the next three on the list, who are:

4. Melinda PayneDecember 5, 2013 at 7:16 PM
5. Mary Jo KaczmarskiDecember 11, 2013 at 5:01 PM
6. Diane SiburtDecember 5, 2013 at 7:13 PM

If you are a winner, email me your name, your address at butdoctorihatepink AT gmail Dot com, and I will contact the MedSystem folks, and they will ship your center out to you.

~~~~~
How did I determine the winners?  I made a list of the people who entered, see below.  Then I went to random.org and plugged it in and hit the randomizer button.  Tada!

Congratulations winners!  Please contact me by Saturday December 21.



bourscheidmomDecember 5, 2013 at 6:26 PM
AnonymousDecember 5, 2013 at 6:40 PM
AnonymousDecember 5, 2013 at 6:45 PM
KimloparkDecember 5, 2013 at 6:54 PM
Diane SiburtDecember 5, 2013 at 7:13 PM
Melinda PayneDecember 5, 2013 at 7:16 PM
Katya02December 5, 2013 at 9:24 PM
AnonymousDecember 5, 2013 at 10:30 PM
ToriDecember 6, 2013 at 12:51 AM
Sue Ann ReinerDecember 6, 2013 at 3:29 AM
CarolineDecember 6, 2013 at 4:57 AM
GhalesDecember 6, 2013 at 8:04 AM
~Dawn~December 6, 2013 at 11:06 AM
SueDecember 6, 2013 at 2:04 PM
dianeabbyDecember 7, 2013 at 9:44 PM
Kim BelcheffDecember 8, 2013 at 1:01 AM
elizabeth starlingDecember 8, 2013 at 8:08 AM
susie kingDecember 8, 2013 at 3:50 PM
Kim KendallDecember 9, 2013 at 1:25 PM
LaCindaBDecember 10, 2013 at 8:23 PM
SheSewChicDecember 11, 2013 at 1:17 PM
MariaDecember 11, 2013 at 3:28 PM
~Dawn~December 12, 2013 at 10:09 AM
Mary Jo KaczmarskiDecember 11, 2013 at 5:01 PM

Wednesday, December 11, 2013

Beauty and Memories

The day I discovered I was ugly, my curly black hair brushed against my shoulders, tickling, warm as the sun burnishing my skin.   My hair, no matter how many years between cuttings, would never get long, no matter how old I got, but once I could feel it touching my shoulders, I felt lovely. I still prefer it longer and am sad that cancer has taken that away from me.  My sister had really beautiful hair, (still does) long, light,  fine, straight and shiny.  Her eyes, too, were a changeable hazel/green  and she had light skin and a normal shaped body.  On the contrary, I was dark, with frizzy, thick, black, curly hair - not only on my head but legs, with caterpillar eyebrows and a mustache.  My eyes were muddy brown and I was skinny as a broomstick.

In the 1960s I still was not aware my appearance was a problem and the neighborhood kids didn't do much teasing back then, or at least, no more to me than anybody.  I was called chicken legs and twiggy but everybody was called names.   I knew my sister was prettier than I was, but I was older, it seemed to even out.  I just knew we were different, and because I could tan and she burned, I felt like I got an okay deal.

As younger children, we wanted the same thing in regards to appearance - long hair.  My sister and I would pin towels on our heads and pretend it was hair, brush it back and dance with our newly waist length hair, or we'd pretend to be mermaids, swimming in our sunken living room with our flowing towel hair.  In real life, hers did get long and mine wouldn't grow.  But, she had to sit there with her thin, easily tangled hair, my impatient Irish mother brushing it, trying to untangle it and pulling hard, tears in my sister's eyes spilling down her cheeks. I remember feeling sorry for my sister and so offered to take over the job.  I knew to start at the bottom, holding handfuls of hair above where I brushed so she would not feel pain.  Because of the texture of my hair, I escaped the regular torture that I didn't have an older sister to help with.   I still needed my hair brushed, and earned a smack on the head with a brush if I moved, but because my hair was thick, I didn't endure it as as often as my poor sister.  The only problem was that it brushed into a fuzz ball.

The day I knew, I was about ten, walking home from Raley's grocery store with a bag of sunflower seeds and a coke.  Back in those days, you got your soda from a machine.  You dropped your dime in, a cup came down, followed by crushed ice, then the syrup mixed with carbonated water flowed.  Magically, the soda always filled exactly to the top of the cup and when it stopped, a plastic door would unlock, granting you privilege to your sweet drink. You pulled the paper cup out carefully because it was pinched between two prongs, and if you squeezed too hard, you'd lose some precious soda. Every once in a while, you lost your dime but got a show.   The paper cup would come down sideways, and then the ice would come down like hail, bouncing off the cup like jiffy pop.  Next the soda would splatter everywhere, creating an upside down fountain, brown drops sliding down the stainless steel container, stickying the plastic door, dripping through the open steel bars on the bottom that were made for such a contingency. You could not slide up the plastic door up at any time during the filling process to straighten your cup,  so you had to helplessly watch your drink and your dime disappear.   I wondered: what happened to that spilled soda?  Did it get recycled back to wherever the new soda came from?

Most times though, the machine worked and you'd get your Coke.  Being ten, you could walk home, alternating a sip of sweet soda mixed with the salty munch sunflower seeds.  We kids became expert at spitting out the shell..  

Sacramento in the summer was hot.  Egg-frying hot we called it, and every year on the hottest days, one of us did steal an egg from our mother's refrigerator and crack it on the sidewalk.  They never did fry but would get white around the edges.   We'd get bored waiting for it to cook and leave to go ride bikes or play army, where the boys would be soldiers and the girls would be nurses, none of us complaining about gender inequality.  The forgotten egg would stink for a while and then creatures would get them. Or, the weekend would come and our fathers would wash them away with hoses, we never knew.   But we kids, who lived in the court on Grinnell Way in the '60s, we would go barefoot even in the egg-frying heat -  even though it was over 100 outside. Our feet must have been made of leather, built up with calluses to withstand it.  We did have flip-flops and Keds, which our moms would sometimes make us put on, "It's hot out, put your shoes on!"  but barefoot was the style, a reflection of our freedom, and to this day, I rarely wear shoes unless I leave the house.  We kids were allowed to run free back then, no play dates, no planned activities, no restrictions. Summer was for us.  We would take our allowance or beg for 15 cents and go to the store almost every day,  barefoot.  To get to Raleys, we would stick to grass as long as we could, than when we got to main streets we'd hop on the asphalt from shady spot to shady spot and try to find painted lines to walk on.  There were no bike lanes in those days, so the painted lines were in parking lots, where we'd walk zig-zag to get to the store in order to keep our feet cool enough to not burn.  Once inside the store, the cool, air-conditioned tile on scorched feet was like balm and we would walk around until we felt healed.  Then, we'd pay for our treat and hit the soda machine (which was outside the store) and walk back home; for me,  knowing a book was waiting if somebody couldn't play.

On this summer day that I remember so clearly, it was hot as usual but slightly windy which made my hair blow in the breeze. I felt beautiful, exotic, tanned.  I felt each tangled curl against my face; my shoulders.  I imagined that everybody seeing me going down the street was wondering who that girl with the magical hair was and where was she going?  I'd smile at cars that passed, figuring they noticed my lovely hair and my dark skin. Close to home, I walked down the center of our court, hot feet ignored, and I'd shake my head to move the hair.  I was gorgeous and I knew it.

The rest of the day was vague, but probably like all the rest I had in the summer.  I'd meet up with friends and we'd climb trees, or play "pretend" games or dress our Barbies.  Summers were magical.  Our moms mostly didn't work and didn't mother the way we mother now, or at least, mine didn't. We would get breakfast and then be kicked out of the house, told not to come home until the street lights came on.  We were free to ride bikes, run in and out of each other's houses (Michelle's mom always had pickles, Patty's mom made cinnamon toast). Lynn was good for stealing her mom's cigarettes and her Dad was the first person who ever had remote control on the TV, the cord snaking from the TV to the handrest of his La-Z-Boy. Me, I had a pool in my backyard,  but couldn't have friends over to swim too often as somebody had to watch.  My mom was too busy and the filter was always full of frogs.

My favorite thing in the world was reading, and I would find a tree, sit under it with my treats, and read about girls who had fascinating lives:  Scarlett O'Hara, Marjorie Morningstar, Mary Frances Nolan, and sometimes a boy such as Herbie Bookbinder.  Books were my solace and my pleasure and I escaped into them daily.  My friends liked to read too, and we would "read" together, sitting under the shade of a tree, grass tickling our tan legs.  I thought back then that reading would be the one thing I would want to do, even on my deathbed.  Now that I am close to that bed, four years into chemo, it's rare when I can concentrate on a story.

Whatever I did that day of the glorious hair, that night, I was in my room and heard my mother and father discussing me with concern: a serious, quiet conversation.  It is my father's voice that stays with me.  "Ann has to do something with that hair, she looks terrible.  I can't have my daughter looking like that."  The words struck me to my heart.  I had gone from feeling beautiful to feeling ugly in an instant.  My own father said so. In my memory, the conversation continued for quite a while, me hovering in front of the closed door: how hairy I was, how awful I looked, how difficult I was when it was time for a haircut, my bad teeth that would need expensive braces,  how my mother didn't know what to do with me, how much prettier my sister was. Later, my father called me in and asked me what kind of haircut I wanted.  I had liked my hair so I didn't even know how to answer that question. He had put the responsibility on me, which was something they often did.  When I said I liked the way it was, I was considered disrespectful, and yelled at.  I was somehow at fault for my appearance.

Alone in my room, I realized I had not been beautiful walking down the street that day, and my imagination switched -  people who had seen me were probably laughing, not admiring.

That was the last time in my life I felt free and beautiful.

Like that coke machine, the cup had unexpectedly come down sideways and my self-esteem splattered.

Of course, in later years I found other things to be proud of about myself both physically and more importantly - mentally. I'm a loving mother, I'm a good cook, I was great at every job I had.  But I have always felt unattractive, and I wonder what would have happened if my father had ever said, "Ann, you look beautiful."  The closest he ever got was telling me at a Father/Daughter Dance that I'd given him a hard-on. Both of my parents were alcoholics - the serious kind, the kind who drink a liter or more a day.  So, while that might have disturbed another girl, to me it was normal.  I was a teenager and he was drunk, and he apologized the next day when he sobered up and I told him that it was okay, I even said it was normal.  To me, it was.  But it really wasn't, none of it was.  But it did teach me what was of value when it came to beauty.  I ended up the girl with the ugly face, but the big boobs, and that would have to do, and hey, that's what men want, including my own father.  With a mastectomy, I had to let all that go.

In later years, he continued to find his progeny unattractive - he complained about his 10 year old granddaughter and her weight, although it was more of a complaint about her parents and how they allow her to eat.  She is a lovely girl with the long hair I've always dreamed of, and back when she was allowed to spend time with me, I combed her long fine hair exactly the way I did my sister's.  She was hardly fat by today's standards, although I don't know what she looks like now.  The truth is, my father wasn't able to find the beauty in some of his family and really, much of his life,  and so left us to struggle to find it in ourselves.

Our world today is so full of pressures on women to be beautiful - so much more than it was back when I was young.  I'm not sure how young girls who are average looking, like I was, and who live in dysfunctional families, as I did, can find their own beauty when they do not have supportive people in their environment. The pressure of modern society is tremendous.

This story leads somewhere:  I was recently asked by a professional photographer if she could take my photo,  and this memory came back to me, along with all my insecurities.  I wanted to say no, as I have never liked having my photo taken, and do not see physical beauty in myself.  In video, when you can talk, you can explain, there is movement, and liveliness and more shows.  When it is a still photo....you are bare, you are only your body.  Or so I thought.  When I saw Anastasia's photos I realized this was a woman who could find beauty in reality; she was an artist.

I'd long ago promised myself that if I was offered an experience because of this blog, and my health allowed, I would say yes.  In health, I'd said no to many things in my life, because of fear, because of lack of confidence, because of family obligations or time or a job - and my chances at yes are dwindling.

So I said yes.

The scene is set and the pictures and experience with Anastasia will be in another post.  And, I may continue to blog about some of my other memories occasionally, as there is more to me than just cancer, and some of what I've experienced has led to the way I have dealt with this disease.









Please don't forget to vote for me in Healthline's Best Blog Competition.  You can vote once per day and the prize is $1,000.00.  As always, it will go into my son's college fun.

Thursday, December 5, 2013

Giveaway and Review - MedCenter System

It's not a secret that cancer patients take drugs.  As do the elderly and most of of the people in this country. And, if you take more than one, like I do, then you end up having pill bottles stacked around. Not only that, but if you have chemo-brain, you might not remember how many pills you have taken in a day.

I know I have done this - had a day of pain and likely taken more than prescribed.  On the other end, I've had days where I felt good and didn't take any, when one of them is supposed to be taken anyway to keep the pain control at a steady level.   Non-compliance with medication is a huge problem in the medical world, and a lot of it is accidental.  "Did I take my pills today?  Hmmm.....well, I guess I better take one/skip one, just in case."   So, when I was asked to review this MedCenter System, I didn't hesitate.

The MedCenter System is not one of those weekly pill counters that still leaves you with bottles of pills in your bathroom or bedside or kitchen - several types of which I've tried and discarded.  It seems silly to only use it for a week when you have a month of medicine.  This system has the entire month at your disposal in a very handy and neat-looking form factor.  Not only that, it comes with a timer that you can set for up to four times a day, for your morning, afternoon, evening and nighttime meds, and will remind you when your next dose is due.  Each case end has a different color - green means full, red means empty and you can see it at a glance.  There is a little tray marked "today's pills" and you take that case out of the stand, put it in the tray and take your meds at the appropriate time of the day, and then when you put it back that night, you turn it over to the red side, and pull out the next days pills.

There are only two problems that I have found using this system.  One, the containers can be difficult to open at first.  I had a spoon sitting beside the system so I could open using that instead of my fingers. It has a little curve on the side so a spoon will just pop it open.   If you are setting it up for an elderly parent, you may want to open and close each case for a bit to loosen it up, and show them the spoon trick.   They do, however, loosen, and not all were tight - 90% of them were easy to use straight from the box.  The other problem is that not all of us get a monthly supply of pills at once.  Some of mine are every ten days, some every month, and that happens at different times during the month. I used to save all the bottles so I'd see how empty they were getting and know when to refill.  Instead, I now keep a little pad and paper behind the system with the prescription number and refill date (which I also put into my calendar).

The best part is that I don't take too many meds per day anymore. If I'm having a bad day with pain, then I just know I have to take what is in the container and not keep reaching for the bottle, possibly overdosing myself and then have the problem of being short at the end of the month.   But the best best part is that I have my counter cleaned up.  I keep mine in the kitchen as it is the handiest place.

Before:



After:


As you can see, there is an open spot for your nasal spray, if you happen to be addicted to Afrin like I am.

This is an excellent product for anybody who needs to take medications and I highly recommend it.  It would be especially handy for a confused elderly person but is very useful for me too.

Not that I'm not confused. Or, by some people's estimating (hello son), elderly.

So, where do you get one?  Well, the MedCenter System products can be found nationwide at a variety of retailers including Walgreens, as well as hundreds of .coms, including our favorite store, Amazon.com

But, in honor of this month of giving, the company has agreed to giveaway not one, not two, but three of these MedCenter Systems to my readers!

Here is all  you have to do.  Go to https://www.facebook.com/MedCenterSystems and "like" their facebook page.   Then come back here, leave a comment telling me you have done so, and I will randomly choose a winner.  You must comment by noon on December 12th.   You may remain anonymous in your comments but you will have to share your name and address with me privately if you do win so you can be shipped the product.  The company promises it will ship as soon as they get it, so it might make a nice Christmas gift.

Oh, and if you can, please take the time to vote for me on Healthline's Best Blogs contest.  Not a requirement of entry but I would appreciate it.

 The contest is closed and the winners will be announced this week.  Thank you!

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,

Love,

Ann






(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 home........how 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.

Damn.

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.