SugarWish

Sugarwish

When I was a kid, my life revolved around candy.  I bet yours did too.  Remember when you were a child and you thought the only purpose to being a grown-up was to be able to eat as much candy as you wanted, any time you wanted it?   I do.  Those were simpler times, weren't they? Your days were about candy: how much you could get, how much you could eat, where you could hide it so your little brother wouldn't steal it, and when you could get more.  Candy, to a kid, is as precious and valued as a diamond is to a 1950s unmarried woman.   You just knew that when you were under nobody's control anymore, when you were a "grown up,"  you would eat as much as you wanted, anytime you wanted, any kind you wanted, and nobody could stop you. Your house would be decorated with candy, every drawer full of it.   Life would be perfect.

Then you grew up.  You realized teeth don't last forever, waistlines grow, and unless they have a fetish, men don't kiss women with blue tongues.  So you stop the candy eating.  You never really lose your taste for it;  you sneak your favorites out of your kid's Halloween bag and sometimes buy some, but mostly you stick to chocolate because it's for adults, and hey, it may have some health properties.  But all those things you used to love: Sprees and Swedish Fish and Sour Patch Kids and Jawbreakers?  They are a distant memory.

And then, you get cancer.

One thing about cancer is that people are very kind to you.  I had absolutely no idea how very gracious human beings could be until I was struck by this disease.  It seems that nearly weekly, somebody drops me a pot of food, or brings me a little treat, or sends me a card or does something to otherwise surprise and please me, for no reason at all except they want to help me through this.  The mail will arrive and in it will be a rub-on tattoo of a kind I'd wished for, or a bag of mints that helped somebody else with nausea or, like recently - flowers.

It's just astonishing.  I really didn't know that people were this kind and caring until I got this horrible disease.   Despite daily media portrayals depicting the worst of humanity, the vast majority of people are loving beings who care about others and want to help.

This outpouring of kindness I've experienced can create a small problem however - thanking them.  I'm sure for normal people this is a simple task: you just whip out thank you cards and your pen that you keep in a specific place, write a thank you note, find a stamp that is also kept in its place, and slip it into your mailbox.

For me, with my ADD tendencies this desire to thank somebody can take on  Keystone Cop-like confusion.  Worse, because I'm a scrapbooker, I also have started to become a card-maker.  Now when somebody does something nice for me,  I want to make a unique thank you card from the heart rather than use something store-bought.  It seems the least I can do, to give thanks with something made by me.

But first, I need to gather my supplies:  my scissors, which are in some drawer somewhere, my crystals, which might be in that blue box in the computer room, my punch which I think I last saw on the shelf near the scrapbook magazines, my paper which actually is kind of organized by color on a paper holder but which has a six foot container of shoes and two shelves in front of it.  Then I must grab my cards, of course, my embossing machine, my sandpaper, my embossing powder and my glue, which I know I put in a jar......somewhere.  I lent my papercutter to my son for a science project a few weeks ago so he must know where it is.  Then, because I don't want to send somebody something old-fashioned, I need to flip through the latest magazines and Pinterest to see the newest card techniques. Being a newbie, designs have to be simple, so I find easy-to-make cards but realize I'm out of blue Washi tape so it's off to Michael's I go, but first, I have to take a pain pill and a hot bath to loosen my muscles for walking.

Hours later, supplies gathered,  I'm set up, which means my stuff is spread all over the dining room table and I have to finish quick before dinner.  Finally, first card finished, glue dried,  it's time to write a note and mail one.  And, I hesitate.  This is where  my perfectionist tendencies kick in, and I realize none of the cards I made are good enough to send to people who have been that nice to me.  They all look like novice crap, how can I send that??

This is an old psychological problem from back in the day when I, as a little girl, made my mother what I thought was a beautiful and useful box for these tiny sugar pills she carried around for coffee.  I used an aspirin tin, tissue paper and Modge Podge and proudly handed it to her, imaging her thinking of me as she dropped sweetener into her coffee at work or school. Instead, she threw back it at me saying it was the ugliest thing she'd ever seen - a lasting memory, and one that affects me each time I make something.   So, aside from all my ADD organizational problems, I also must overcome this psychological one and spend time reminding myself that incident was 50 years ago, my mother wasn't sober, people do like homemade things even if they aren't perfect, and they will know it was made with love.  Dammit, I AM good enough.

Then, convinced,  note written, bad handwriting and all,  I try to find the envelopes that match the cards.

Sigh.  Where the f*ck are they???

I can't find them.  They are probably with the stamps.  Where are the stamps?  Now what am I supposed to do?

Well, it's dinner time, and I'm not exactly sure where I left the recipient's address anyway.  So I'll clean up and try again another day.

So, if I owe you thanks, you can see why I'm behind.   I'm sorry.

Stick with me because this story is related:  Remember a couple weeks back I'd been really sick and unable to get out of bed?  It happens off and on, and I now call them my "downer days" after that picture of that poor cow we've all seen being "encouraged" to stand up with a forklift.    Anyway, I was recovering but sick and feeling ooky and still too weak to stand, and I decided to check my email because I can do that in bed.  I got an e-card saying I'd received a SugarWish.  I paid little attention to it because I didn't know what it was.

Then, a day or two later I was finally up and about and feeling better but still depressed, knowing more of these days were in my future, when I got an emailed reminder about my SugarWish.  This time, I followed the link, and saw it was an e-card from a friend, inviting me to pick out candy.

Pick out candy?

Suddenly intrigued, I clicked the link, and I felt that old childhood candy excitement mixed with greed.  My spirits surged immediately.  Here's what is is:  SugarWish is is a company that a buyer uses to send an e-card message to their giftee along with a specific number of candy bags.  The buyer pays in advance, shipping is included, they write the message, and all they have to know is the person's email address.  The recipient gets the e-card with their friend's sentiment and telling them that they can choose candy.  They select their allowed number, put in their address, and that's it!  A couple of days later, their choices arrive, well-packed and fresh.

And, SugarWish has about 50 different kinds of candy to choose from, so there is sure to be something for everybody.  I went through all of my choices, feeling like a kid again, just simple and joyous.  I could have any of this?   I could have FOUR?  And I don't have to pay?    I called my 16 year old son over and he sat next to me and told me what his selections would be and we had a good conversation about candies and what I'd liked as a child and how I used to eat jawbreakers until my tongue bled, and the rule was to check all the colors as you licked through it. We reminisced how I'd eat all the yellow runts when he got them in machines as he didn't care for banana, so he shared his candy memories too.  I had a serious blast choosing; it took at least an hour to go through the candy choices and reminisce about the last time I'd had that kind, and did I want it again,   and the whole experience brought me right out of the funk I'd been in.   (I picked Sour Patch Kids, Spree, Mike & Ike's and Gummy Grapefruit slices, if you must know).  I hit send and three days later, a package showed up on my doorstep, beautifully wrapped,  with the individual bags of candy in it.  And, there was plenty too, it wasn't skimpy.  And, I had as much fun eating it as I did picking it out.  Most of them I had not tasted in 30 years.

Sprees are delicious, my friends.   Delicious.

My doctor had given me orders to gain weight and I went from the 90s to 101 in the week I got the candy.  I'm not saying that the candy did it, but I think just feeling so excited about something, feeling silly and child-like just stimulated my appetite.  And, if I felt like a little snack I could grab a piece (like a kid) and not have to do anything or ask anyone.  And, I ate it like a kid too, which means you pick one of each color and eat them in order of worst to best.  (Worst: Green.  Best: Red)  As for my health?   My doctor told me "calories are calories" and is fine with my eating this stuff.

(It's sad I have to say this, but it's a cancer blog:  according to the Mayo Clnic and every single legitimate medical site, that old "sugar feeds cancer" myth is just that - a myth.  So, don't put that in the comments as I don't want misinformation spread and will delete them.)  Obviously, nobody is talking about it being a main part of anybody's diet, just a treat here and there.

I realized that this not only was a fantastic gift for me, or any ill patient to get, but it could be an enjoyable gift to give for birthdays or special days.  It's easy to use, I don't need to gather supplies, go shopping, find stamps, go to a post-office, or do any of the things I now find quite difficult.  And, everybody likes candy.

I immediately sent one to a friend of mine whose cancer is growing like mine and who is struggling, as am I.  She had not been able to eat for a while as she is having upper digestive problems, but told me that suddenly, food was going down and she can eat, so I immediately sent her one in congratulations, and she also loved it.  And, my sister has a new grandchild, so I sent her one to remind her that just because she's a Grandma, that doesn't mean she can't be kid-like too.  And, both of these ladies were as excited as I was to select their candies.

There is just something amazingly fun about this SugarWish idea.

I don't often discuss products here on this blog, despite hundreds of requests -  but this one upped my happiness factor tremendously, and not only that,solves a big problem of mine:  It's a simple way for me to send gifts and anything simple is important to me right now.  Also, I want people to know this is a fun gift for anybody with a catastrophic illness who can still eat, as it takes you right back to childhood.  Anything that makes me feel like a  kid again; that makes me forget cancer (or whatever illness we have) for a few minutes, well, it's a good thing.  Anything that gets me eating is a good thing, and anything that puts calories in me is good.

SugarWish is all of these things and more.  Good for the sick to get, good for the sick to send.  Win/win.

I love them.

So I did something out of character for me.  I contacted the company and asked if they wanted to hold a contest on my blog.  They had never heard of me, but decided to do it.     Now I have to tell you that I get 20 or 30 requests from PR people wanting me to post about something every single day and I mostly ignore them.  But I loved this company so much I wanted you to know about it.

So, try them yourself.  Enter the contest and win a Petite Sugarwish.  How?    First, like them on facebook here:

 https://www.facebook.com/sendasugarwish

Then come back and post a comment on my blog saying you've liked them, and tell me a candy memory, or your favorite candy or something fun about candy.   I will pick a name randomly, perhaps by video, and you will win a Petite Sugarwish, which you can send to yourself or somebody else.  It's up to you and nobody will ever know what you choose.

Also, if you choose to buy any, please put my name in the check-out box after payment, just to see if I've done any good for them.  :)  I am not on commission or anything like that; I won't get something from sales - I truly want to help a sweet start-up company get started.  But it would be nice to know if I helped them.

The contest will end on May 10th at 12 noon CA time, which is still time for mom to get the e-card by Mother's Day.  So you have lots of time to win.

Good luck.

Now, I still have a card to mail and where are those damn stamps?

The Intolerable Gemzar

Boys and Girls, in the last episode of Breast Cancer?  But Doctor, I Hate Pink, I told you good news and bad news.

The good news was that my last scan showed a 50% reduction in tumor burden, holding off the inevitable for a time.  The bad news was it was Gemzar that did it.  While Gemzar is normally considered one of the easy chemos, I don't find it so, and it caused me some suffering.  My body rejects Gemzar, and I must say, it is  very odd for my body to reject anything with the word "gem" in it.

We were going to quit, but because of the good results, my doctor cut my dosage in half, and back on it I went.

Only, I didn't.   Because it is a myelosuppresive drug, (as are all chemos)  and my white cell count has still not recovered from the last one I had, weeks ago, I couldn't get it.  For some reason, this one does a number on my marrow and my "grans" stay steady at only 1.3.  Which makes me quite susceptible to infection (as well as understanding the decimal system.)

So my nurses have cancelled all my Gemzar appointments until I talk to the doctor.  So much for that.  I'm off chemo, however temporarily.   That, my friends, is a Bad Thing.

I worry that cancer is left to grow unfettered in my liver and once again, my dream of living for a year has become more fantasy than possibility.

So that's my health news.  I have five half written blog posts for you on various topics of cancer and candy,  and I will finish them and post them but I suddenly feel the urge to nest and have been doing many homey things, like scrapbook instead of blog.   (Not clean, God forbid.)

I wanted to tell you about an article in the New York Times that I was interviewed for:

Our Feel Good War on Breast Cancer

My part is at the end but truly, my opinion is sprinkled all throughout the piece and there is nothing I disagree with.  I spoke to Peggy for a while on the phone and while I'm sorry I brought up those old cancer fears in her, we were very sympatico when it came to this subject.  I hope you read it, learn from it and pass it along to your friends.  It's an important topic.

Retreat

My husband said, "Did you know it's been a month since your last blog post?"  Nag nag.  But no, I hadn't realized that - time flies when you are having fun.

I also have a very sweet post started for you but until then, you'll have to take this even sweeter news:

I just had a  CT scan and it showed a 50% reduction in tumor burden.

I know, right?  We all thought I was not long for this world, and here I am, cancer retreating like the French in WWII.

The chemo I began in late January, Gemzar, was just about intolerable.  I didn't think it was working, and worse, it was hurting me with all that blood cell killing and all.  I knew I was not going to make it too long on that drug, and I didn't - after one dose reduction and a few more rounds that I was unable to finish,  we stopped it at the end of March.   My doctor said he'd put me on TDM1, but first, I needed a baseline scan.

I thought it was highly possible, based on all my symptoms, that my time was short and I wasn't going to make my goal - my son's high school graduation.

I do what all women do every morning.  You get up, you brush your teeth and hair, wash your face, you  look in the mirror and check for stray hairs, inspect your skin for new wrinkles, and of course, you check to see if your eyeballs have turned yellow from jaundice.

Surprisingly,  my eyeballs stayed white (okay, sort of white with pink lines) and so I knew I wasn't at end stages, but I was also freaking miserable as I wrote about in my last post.   I couldn't make it on that drug.  I figured that it wasn't working for me; I was declining.

I've been off the Gemzar for about 3 weeks, and I've slowly started to feel better.  So my decline was from the drug, and not the cancer.  My birthday was April 5th, and I had told people in early March not to come visit me because I'd been so sick they would have just been watching me sleep, but as it turns out, they could have come.  (Lesson:  you can't plan with cancer.)  Since I stopped the Gemzar, I have been able to cook a couple of meals, (and even eat a few bites although I'm still down 9 pounds) stand for longer periods of time, stay awake for hours at a time, and just feel more and more whole.  I even woke up at 10:00 a.m one day, without an alarm.  What a luxury!  Now, I still have a lot of pain in the liver and stomach and have a lot of gastro problems and am very tired.  If you'd dropped the Ann from 4 years ago into the body I occupy now, she'd have run screaming, just like the aforementioned French.   But, in comparison to last month -  I have improved a lot, and no longer wonder if I'll be dead within the month.

On my birthday,  I even managed to go to Michael's to get a scrapbook and Macy's to get a sweater. I rarely leave the house so that was impressive.  (And I remembered why I don't leave as it was also energy-zapping).

And, I had the energy to turn fifty-five! (An age that would have normally taken me a lot of mental energy but now I'm just thankful for).   I went out to dinner on my birthday with my family, and even ate a delicious steak and had tastes of sides.  It took two days to recover from those things and I was super nauseous the next day, probably from taking in more calories at one time than my body usually does in a month.  But,  I did it, enjoyed it and was so grateful to be able to do it.  I was very happy that day.

So, in case you hadn't figured it out -  this is good news.  Something is finally working to shrink my tumor.  Even cutting out half my liver didn't do it.

With the good comes the bad:  it was the intolerable Gemzar that is shrinking the tumor, so back on the intolerable Gemzar I go.  I start Wednesday with a 50% dose reduction, and I will refill all my anti-nausea pills, wash my sheets and arrange for my son to get home from school on his own by Thursday.  Despite the horrible side effects, going back on the drug was my idea.  My doctor was willing to put me on TDM1.  But, if something is actually working for me I'd be a fool not to try again.  I want that extra four months or whatever this will technically give me, and so I'll suffer for it.  I still have TDM1 to use down the road.

After seeing my path report, I hadn't realized that the cancer is abutting the portal vein, which is not a good place for a cancer to be, at least in my uneducated opinion.  Right now, the vein shows no "significant displacement."  I'm not sure what happens when there is significant displacement but I'm not sure I want to find out.  Shrinking it down off that vein sounds like a good idea, even if I have to feel bad a little while longer.  Also, apparently, the cancer was on the march and I'd had swollen lymph nodes near my liver, which have now shrunk.

Now, here I go, busting some bubbles like a kid on a summer morning, but facts must be faced:   the thing Stage IV breast cancer patients know is that when you get regression or even NED, it's temporary.  Cancer always wins.   Gemzar could continue to work and shrink the cancer down to nothing (NED) and it could stay that way for months, or a year.  Hell, a miracle could happen and it could be two years.  I could see my kid off to college and then be the woman people whisper about, "wasn't she supposed to be dead by now?"

Equally possible, the next 3 month scan could show cancer the size of France.  You just don't know in Cancer World.  I have known women who were NED who died six months later.

But, me?    I am living in today.  My cancer has shrunk - today.  Something worked - today.  Something got me closer to my goal of seeing my son off to college - today. Screw the future.  Today is good.  Today is full of hope. Today is beautiful.

I did what every girl does to celebrate  - I bought some new shoes.  I didn't get the kind I'd have bought four years ago, with sky high heels.  I bought some Bobs, the flats that are by Sketcher, but I made sure that they had glitter in them.  Some things never change.  I decided if the cancer was shrinking, if I was approaching something resembling health, I should go out in in real shoes, and not slippers.

Shoes with sparkles, to reflect my optimism.

I take a photo on my birthday every year.  I am proud that I was able to do it this year and so I share it with you.  I am 55, and damn happy to be alive.

Ann:  now with less tumor!!

Anger

Do you remember those toys you had as a kid, those Clown Blow-Up Punching Bags?  We called them "boppers" and in my circle, every kid had one.  They were as tall as your five year old self and were good for releasing aggression.   You'd fill the bottom with sand, blow it up and then punch the heck out of it.  No matter how hard you punched, the smiling clown would always pop right back up, happy to take more of your abuse.

After time and lots of punches, the doll would start to sag.  It'd take your punch and then lie on the floor for a second, gasping, before slowing rising for the next punch.  It's white plastic skin would start to get a little wrinkled, and your fist would sink deeper into his belly.  Eventually, the air would escape and the punching bag would be just a heap of useless plastic puddled on the floor, defeated forever.

I know how that clown feels.  This latest round of Gemzar left me pooled on the floor, whimpering, "I give up."

Immediately after infusion last week, I came home, went to bed and stayed in bed until Sunday.   No steroid energy. Just pain, nausea, vomiting, weakness and illness.    Chemo came at me in a fury, like a 500 pound Sumo wrestler intent on giving me the beat-down of my life, and after my most recent and past beat-downs, I just am not able to pop up the way I used to.  After seven chemos, the air is going out of me, my skin wrinkling.  My times lying on the floor, gasping, are getting longer.

Sometime last week, lying in my drug-sweat stinked sheets, teeth unbrushed with vomit crusting on them, watching my stomach and legs shrivel with weight loss, unable to eat, drink, pee, walk - hot flashes alternating between shivers, a migraine along with pain from shoulder to liver to hips and legs, too sick and weak to pick up my head to even look at a book, a TV show, too weak to even turn over, I had my first moments of fury at this disease. I could not move, how could I have energy for this ire?  Yet, internally, deeply,  I was raging was how it was to be for me, and worse, for my family.

This was new.  I have never thought, "why me?"  I am a "why not me?" person.   Bad things happen to good people and there is no rhyme or reason to the chaos life brings.  So, through all of these years, I was accepting.  I got cancer, it sucks for me;  I would handle it.  My job now was to prepare my family as best I could.

But Goddammit!!  My body should be strong: I should be working, planning college visits with my son, looking forward to family events, worried about my wrinkles or widening waistline. I am too young for this, have worked my whole life, and now should be planning for vacations I dreamed of, time alone with my husband instead of planning my funeral.   Why is it that I am in a wretched body, on a good day watching TV in my iPad in bed, on a bad day writhing in agony between drug-induced sleep? This parasite is killing me off, and it has to do it in these incremental doses, making me weaker with a longer recovery time each bout of illness, my children scared at my bedside, my husband having to do everything.  It can't just take me, it has to torture me first - and my beloved family.

I was furious.

Anger, Kubler-Ross said in her book "On Death and Dying" is one of the five stages of grief, along with bargaining, denial, depression, acceptance.  That seemed too simple to me.  For my part,  I went straight to acceptance.   For me there is nobody to be angry at, or bargain with, at least as far as getting cancer is concerned.  I don't believe in a deity who hands disease out like a dealer handing out blackjack hands.  "Lucky you, you get blackjack."  "Sorry, you lose, I'm taking all your cards."  It just made no sense to me,  I can't be angry at that.  Tragedy happens daily: tsunamis, car wrecks, disease - why not to me?

That's not to say I've never been angry.  There is righteous anger I have felt at the way a few people in my life have treated me during the course of this disease; but they have a choice and control over what they do  It's not a fluke.  They deserve my disdain, their behavior is deliberate.

I also have anger that so many undeserving in this world are given what I have been denied, like those who waste their lives in addictions.  I see them, trading all of life's beauty for the next high.  I can't help but feel I deserve what they have thrown away, and I should have the right to pull the life force right out of them and put it into me.

That kind of anger feels reasonable and justifiable. It is directed at a specific target for a specific reason, and it is easy to push away.  People make their choices, both good and bad, and you can't do anything about it.  Sometimes, if you try, you can even find compassion for people who have lost their way.

This outrage I felt while so sick was different.  It was animalistic.  Undirected and wild. A coyote in a trap will bite.  It's pain and helpless frustration and fury that this was happening to me. When you are that down, when your body takes blow after blow after blow after physical blow, it seems anger - no, rage -  does come welling up without reason.   Somewhere inside your vomiting, ache-filled body and pounding head, it is there.  Pure anger, at just being sick.  Why me?  Why?

But I have choice and control too.  I have taught myself to focus on the tremendous good that has come with this disease, and be accepting over what I can't do anything about.  To steal from the 12 Steppers:  I am powerless, so all I can do is take it one day at a time.  Nobody is promised forever.  Nobody is promised not to suffer.   Acceptance is also part of the deal.

So again - for now  - I recover.  I once again, oh so slowly,  rise out of the battering.   On Saturday, my husband helped me to the bath and changed the sheets.  I brushed my teeth, put on new clothes, and came out fresh, clean and with my anger dissipated.  Back in bed, I saw a squirrel play on a tree outside my window, and smiled when my dog jumped in my bed and pawed me, twice, to try to get me out.  She had thought I'd be out for good, seeing me in the bath, and she was angry too.  Enough of me lying in bed, come play!

Gratefulness and acceptance returned.  I had a sunny day, clean sheets, no more sick layered on me.  The nausea and pain had mostly passed and while I was as weak as a human could be, taking my first shaky baby steps again,  unable to even stand and pour some coffee,  I could start to try to eat and gain strength.  I am luckier than some:  I had help,  I had people checking up on me.  I had a little cat who didn't care if I was angry or sick, who just just wanted to curl up next to my head.

I saw the doctor this week and told him how sick I'd been, and for the foreseeable future, I will be giving up on chemo.  We will try TDM1 as soon as they get it in their clinic, and in the meantime, I'll have yet another CT to see what is going on inside.   Nothing pretty, is my guess.  I think cancer may be invading vital structures, causing these illnesses.  I hope I'm wrong.

I'll try to survive for a little more, because that is what we humans do.  We get punched, we get knocked down, we get mad, and we get up again.  Over and over, until the air is gone.

Luckily, there's still some air in me.

.

A Day in the Life

One of my dreams in life was to wear a sassy pair of red-bottomed Louboutin shoes.

I pictured myself the most fashionable school secretary in the country, flipping down the hallways, a blaze of red showing with each step. Off to the library I'd go, skirt swishing, heels clacking, bottoms flashing.... my shoes costing two weeks of my salary but no matter, the librarian is impressed.

Then cancer slammed me like Hurricane Irene. And, chemo left my bones in wreckage like those shoreside homes you saw on the news, pilings every which way.  I became metastatic, and knew my dreams, both large and small, were coming to an end.  During this time when I might finally decide to splurge on a pair of extremely expensive shoes - a time when you know you have to make these dreams come true or you'll never get them - well, shoes hurt now. Fashionista Ann, who could wear a different outfit every day of the year, and has a hundred pairs of shoes with five inch heels to match,  has taken to wearing slippers and sweats out of the house.

Slippers!

And sweats!

Out of the house!

Sacrilege.

There is too much discomfort in my hips and knees to walk around in any kind of heels these days. And, I have no place to go any more, as I had to give up my job and most activities.  I have no energy or appetite for meals out.  Combine that with a kid approaching college and you realize buying pricey shoes like Louboutins would be a waste of a dream.

I still wanted to try some on though.  And, just recently, to fulfill that dream, a kind friend lent me hers.

So here it is!  A day in the life of a metastatic cancer patient in her red-bottomed Louboutins.

It is lunchtime, and I get a little reading in before  I have to leave for chemotherapy

Getting my chemo, oh yeah.  Cutest one in the infusion room.

My exuberant puppy Trista welcomes me home.

Time for a nap

Steroids give me enough energy to cook!

And, we end our day watching TV on the couch

So you see, my friends, a gal can still wear her red-bottomed Louboutins doing household chores and going to chemo, just like the movie stars do.  Here's the trick:  carry them in a separate bag, wear slippers, and slip them on right before the flash goes off!

Thank you to J. Nathan Higdon and Trenia for allowing me to have this much fun!

Decline

Today, the gals from Capital Cleaning are here for my Cleaning for a Reason session.  They do a great job and I am going to hire them when my free sessions are over, otherwise the house will be covered with dog dust and male negligence.   If you are in Sacramento and are looking for a housekeeper, please consider using them.  My understanding is that these cleaning companies have to actually PAY the charity Cleaning for a Reason, and if I can help them recoup that money, I would like to do it.  Tell them Ann Silberman from But Doctor I Hate Pink sent you. They'll know.

I've talked to the owners several times - they call ME to remind me of my free appointments.  So they are amazingly caring; it doesn't get better than that.

Anyhoo,  my dog Trista just turned one yesterday, and she's still is so excited about others coming in to the house that she buzzes around them like a fly around a sugar cube, so  I am currently locked in my bedroom with the dogs to allow the ladies the ability to clean without a dog trying to help.

Cherry would sniff them and calm down, but Trista is so bad that she never leaves visitors alone.  She actually sat on my 72 year old cat-loving uncle's lap when he came to visit.  In case you are a new reader, Trista is a greyhound who weighs about 80 pounds, and if she stands on her hind legs, she can put her front paws on my 6'2" husband's shoulders. She is on the taller end of that breed, and reminds me of a skinny lady in stilletos.   She insists on attention at all times from everybody, kind of like I imagine Kim Kardashian does.  If she could get breast implants to make people look at her, she would.  

I grabbed my laptop, so here are some random thoughts while I'm trapped in my beautiful bedroom, the dogs whining for me to let them out so they can attack the dangerous vacuum cleaner:

I used to participate in cancer forums but stopped for several reasons.  One reason was that people kept dying, people that you know and talked to and liked.  They'd suddenly stop posting, and anywhere from two weeks to a month later you'd hear they'd died.  And, I would always think, "but I didn't realize they were that sick" and my next thought was "it could be me next."

Which was stupid, my God, the reason we were on the forum to begin with was we have terminal cancer.  We are that sick, it could be me.  You just can't tell in black and white and by reading posts how long somebody has.

I don't know what happened to them in the two weeks to two months of silence.   Sometimes we'd see a post out of the blue "I'm still here but I've been in the hospital/sick/in pain/unable to write."  Sometimes there would be nothing.  Sometimes there would be a post from a family member saying "Please pray for my sister/wife/mother as she's not doing well but says she misses you all."  Some died suddenly of chemo-related heart attacks, some of failed organs and some?  Just plain cancer.

Those interim weeks/months are a mystery to me.  I have read a lot about how people die of cancer and what happens physically, but those articles concentrate on the last few hours.

Nobody talks about the great decline that happens first.

We all have this fantasy that we will have used all our treatment options and have to face that it's the end and there is nothing left to do.  We think that everybody will know when it's time, and there will be a parade of people in to say good-bye.  You are weak but conscious, in your bed but aware, can turn the morphine off and on, and you can say "I love you" one last time.

But that doesn't seem to be the way it works for all, or even most.  My first bout with c.diff taught me that one illness can take me in a few short hours.  I was very close to dying from that disease and have never forgotten it.  I was pretty much fine one day and nearly gone the next.

Cancer can take you at any time.  If if is a slow decline, whatever cancer you have can cause some problems at the end.  When it's in the liver it will cause a toxic build-up in my blood and I probably won't know anybody at the end, I'll be out of my mind, which many people think has already happened, har har.   I certainly don't want people seeing me like that so, my friends, you are warned:  my husband has instructions for no end-stage visitations.   This is why I urge people who want to visit their loved one with cancer to not delay, as you may not have the time you think you do.  Do it while they are still okay if you want to see them.

Many of you know I have been sick again.  I have blogged my whole experience thus far, and I don't want to leave mystery, so I'll go into detail about how I feel, just like your grandmother when you ask, 'How are you?" and she starts to tell you about her bladder problems and how the hysterectomy she had in 1957 is causing issues.    You are going to get it all.  I mean, I am assuming you are reading this because you want to know what it's like to be nearing the end, so boring as it is, sometimes I have to write about how I physically feel while I am able.

Gradually, over time, pain has increased.  I can feel my liver now, like a big soggy wet sponge lying in my body.   Inside that sponge, is a burning hole, like a baby sun, that I imagine is the cancer.   Livers aren't supposed to hurt until the cancer gets big enough to stretch the lining but it would seem my tumor is near some vital structures (which is why they can't ablate it again) that cause some pain. When I take a deep breath, I can feel the sun expand like a little nova.  And, the regular, constant pain is like I was kicked in the ribs on the right side, an experience I haven't had since I was a child but remember well.   Now, this is not major pain, it's not a super nova; I notice it, but it would not keep me from doing anything.  It's just there, the kind that if you as a healthy person had you'd think "I need to tell my doctor at the next appointment" but then when were were on the exam table, you'd forget.

The pain that does bother me is whole body pain.  I ache from head to toe, all the time.  Probably from years of chemo.  I take hot baths and dilaudid and oxycontin, and frankly, the baths do a better job than the drugs, although I'm not going to skip my medicine to find out.    I should probably up my meds but I worry about getting used to it and it not working at the end.   (I can skip days with no problems now if I am not in pain but addiction is not a worry of mine at this point.)  Save 'em for when you really need them, is my feeling, so I take my regular pills and no more.

I can't expect to be pain-free anymore.

Because of the bone pain,   I am looking forward to spring when I am not cold and I can sit in the sun.  Probably with a fringed afghan around my hunched shoulders, my grey hair dully shining in the sun, my skinny little arms crossed as I hold the afghan closed. Late stage cancer is a lot like you imagine getting old is like.

I also have a lot of lower back pain, and who knows why this is?  I do have osteodegeneration as do most people my age.   Anecdotally, cancer patients frequently end up with back and hip pain post-chemo and naturally, they always think it's mets.  But, it's usually post-treatment pain.  It does go away but it can take quite a while.   I am not "post chemo" and never will be, so I have to live with it.   Even then, while it would limit some activities, like going to Disneyland or sitting for a long time (say on a plane or car), it is still manageable with hot compresses and pain meds.

More difficult: neither of my shoulders have healed from my frozen shoulder situation I got years ago after my mastectomy.  Frankly, I don't think they ever will heal now. I get an occasional cortisone shot which eases up the pain and increases my movement but I still have trouble sleeping on my sides.  I can only sleep on the right side, which might be a problem later since the liver is on the right.   And, being unable to use my shoulders properly has caused my back muscles to tighten up too, so I can't sleep on my stomach without cramping.  The whole shoulder thing has probably increased the rest of the pain.

I am nauseated most times although it's light nausea, like an early pregnancy.  I don't feel in danger of puking - usually.  Gemzar changes that and intensifies it as does some bad smells, but I've been too sick to get chemo for a few weeks so the nausea is down to "you're having a girl" levels.

I have no appetite at all.  I used to be a foodie and now I don't care about food at all.  I would not eat, if living alone, mainly because I'd forget. I have no hunger and in fact, I always feel full.   I also have pain in my stomach, for some reason another little sun.  And, I have some minor reflux, not the volcanic lava rush I got on Navelbine but a gentle acid wash that a tums takes care of easily.

I believe in family meals and we still sit down every night together.  People are kind enough to give us food and maybe once a week I even have energy to cook. The rest of the time, my husband, who works until 6:00 and is missing the chef gene heats up pre-made meals from the grocery store when he gets home.  When we sit down as a family each night, I usually eat.  I have no desire for it but since we are there, I will take a plate and I manage to put some down.  That has kept my weight in the 100 pound range which about normal for me although I lost 4 pounds with my latest illness.

I have almost no expense of energy so it doesn't take much to keep me from losing weight.

The worst is fatigue.   I can't describe the fatigue I feel.  It is nothing like healthy people tiredness.  It is nothing like the fatigue I felt when pregnant, when I had the flu, or stayed up all night watching a Marilyn Monroe marathon on TV (or later, rocking a screaming baby).  It is oppressive, this tiredness, like swamp humidity.  I could sleep for 16 hours and wake up exhausted and after a cup of coffee, need another 16 hours.    Because I have awakened,   I force myself to get up and make my coffee but even that seems too hard these days.  My body is physically weak and standing in the morning is hard, although I gain strength later in the day.   I sleep hour after hour.  I take Ritalin to keep my eyes open; without that drug I would be like Grandpa Simpson or your heroin addict sister, nodding off at special events, mouth open, a slick of drool appearing at the corners, eyes rolling.  This is the symptom that keeps me from doing things.  I am just too exhausted.  I don't even dress most days.  I have sweats I wear, those velour track suits (Juicy knock-offs) that you can wear from morning to morning -  which used to be unthinkable for me, who had enough outfits to wear something different every day.   Now I get dressed one day a week - chemo day.   The last time we went on vacation, to Arizona, it was fatigue that kept me from having dinner with the family and doing things in the morning.  I have about 6 good hours in me and that is it and these days, without Ritalin, those six hours are zero.

My interests are declining.  I used to read the paper cover to cover.  I now skip all the politics, most of the regional news. It doesn't feel relevant and I don't want to get annoyed at those stupid politicians.  (I do live in California, lots of reason to be annoyed.)   I read Dear Abby, Carolyn Hax, local advice columnists,  and the funnies.  Instead, I like to watch Andy Griffith and Duck Dynasty.  TV will always make me happy, as will a good book although I usually nod off after a page or two now.  Oddly enough, all my fashion magazines are unopened. I loved clothes and style.  When my latest magazine arrived, well, that was just a good time for me.  I'd pour myself a glass of ice water and sit for hours flipping through pages and looking at beautiful things and seeing outfits that I could put together out of stuff I had.  Now, I have months' worth still in their plastic wrappers, unread.  I no longer want to shop, because I go nowhere, and don't want to make people have to throw away even more of my junk later.

Shopping is no fun when you don't have a future.  The fantasy that I can wear something cute is just gone, I am only about comfort and stuff not touching my stomach. I am trying to give away special clothes to people who can use them.

You may know I have been sick and I don't know if it's cancer or if it's another round of c.diff.  I had some (TMI ALERT) loose, smelly stools and felt bad, a sign of c.diff and pretty impossible naturally with all the chemo and pain meds I take and the constipation that results.  Let's just say that Senekot has been off my daily med list for a while.  Then I suddenly was unable to get out of bed, my legs like a bowl full of jelly but not as jolly.   I stayed in bed, barely awake for several days, even during the end of the Healthline contest and when Derek set up the other donation event.  I have my phone in bed with me and bleary-eyed, I'd check in but the interest was gone.   I was just too sick to care.  I was fine one day and too ill to wake up fully the next.

Which I imagine is why the posting on forums stops.  It just is not top priority when you are feeling that bad. Nothing is a priority but sleeping.

Without a diagnosis, which is a long story I won't go into except to say this time I tried to get the proper test for a diagnosis, I started taking vancomycin on my own volition.  Again.  Either it worked or I would have gotten better anyway.  Either way, I got up and about again and went to the doctor.  He was stone-faced, my oncologist.  He didn't register any annoyance about my doctoring myself with powerful drugs like leftover vancomycin at all, which was quite kind of him as I bet he felt it.  He just told me to finish the course and,  like every doctor I've ever met, he would not guess what else could cause an illness like that, if it was c.diff or if it was cancer symptoms.

They must have a "Never Guess 101" course in doctor school.

I know I was a bad girl for staying home and treating myself, but my rule is I only go to the ER if I have a fever, and I didn't.  Nobody wants to go to the ER, not even the mentally ill.  And, frankly, I wasn't strong enough to get in the car and if they couldn't see me right way, I wasn't strong enough to sit and wait.  I didn't want to call an ambulance and alert the neighbors. So I lay there.   The one and only time I needed to go to the bathroom, my husband had to almost carry me, my legs were so weak.  I truly thought that this could be it, the big "it"  and I wanted to be in my own bed.

So anyway, clearly, I didn't die. I perked up on the vancomycin (or not), got out of bed, ate some yogurt and popsicles and seemed on the road to recovery.  Then yesterday I went down again.  Then I went up again.

So, who knows?  My current condition is extraordinary tiredness, various pains, weakness in the legs, and that's on a good, regular day.  On a bad day, I sleep.  My husband has a hard time even trying to wake me.

So, maybe that is what these women go through before they die.  Maybe the periods of staying in bed are more frequent and the periods of "health" lessen.  Maybe not.  Maybe they just don't post.

So there are my aches and pains, now don't you roll your eyes at Grandma!

Hope:  There is good cancer news out there:  the long-awaited TDM1 has been approved for late stage metastatic HER2+ women in which herceptin and a taxane have failed, which describes me and then some. It's new name is Kadcyla, which I'll never remember, having followed it as TDM1 for years.  I asked my doctor about it a month ago, knowing it was about to be approved, and he said he'd put me on it as soon as it was available.  I'm not sure that he knew the costs were going to be $100,000 a year though.  We'll see if I still get it, and if I can benefit.   It it works, which it does for about 1/3 of women, it gives a median of 9 extra months of progression-free survival, which is invaluable at my stage and might mean I can make it to my son's high school graduation, which is my goal.  A goal which used to seem easy and now seems almost impossible.   But TDM1 doesn't work for everybody and after my liver resection failed, as has every chemo I've been on, I am not going to get too excited.  It is nice to have something new though, and apparently easier to take than the things I've been on and that is wonderful.  I'm kind of sick of chemo and don't seem to tolerate it the way I used to.

Maybe with TDM1, I can back off this decline, even if for a short time. My nephew is having a baby and I am very eager to go see the newest member of our family when he or she is born.  Right now, I simply can't travel, and I am sure they won't travel with a baby soon enough for me to be alive to see it.   I'd also like to see my cousin's daughter's Bat Mitvah.  I've never been to one and she is a darling child and it's important to her.  I'd love to be there to support her.  I was also invited by the City of Solvang to visit, more on that later.

But, I can't think about these things as they are amorphous, not reality for me (being hundreds of miles away each), dreams that may not come true.

Ah!!!  The ladies from Capital Cleaning just left and my house smells so clean and fresh!  It is so nice to have everything sparkling, even if it only lasts a day.  My son came home from school and asked for an omelet and I had the strength to make him one.  My friend Kathy had brought me homemade food so I have something to pop in the oven, and we will eat real food tonight.

Life is good.

Healthline Contest Official Winner

It's now official, I have the 1099 and everything to prove it.

They did a nice write-up of me, I put it in the side links but wanted to share it here with you all, since it really was YOU who helped me win.

http://www.healthline.com/health-news/breast-cancer-blog-wins-Healthline-contest-022013

In a day or two I will write up the thrilling tale of my latest illness.  It involves a long-suffering doctor, a stricken cancer patient and a nurse who wasn't meant to be.   Stay tuned.....