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!!