Sunday, July 31, 2011

Relay for Life - Sacramento

You all know I'm not a fan of the Komen Marketeers, but I do believe that the American Cancer Society does good work - I have personally benefited from their outreach.  So, I want to let you know about a Relay for Life happening Saturday, August 6th, 2011 in Sacramento.

I was invited to the Survivors breakfast but, um, you know - it's breakfast.  8:00 a.m.  I'd rather sleep.  Sleep helps me survive, although survival with me is kind of iffy right now.

Plus, they said Survivors will take a Victory lap, which means I would have to run or walk around a track, which I haven't done since I grew breasts, and even though I'm missing one, nothing has changed. 

Not to mention I am still waiting on the "victory."

There is a Luminaria ceremony at 9:00 pm, which sounds lovely, but again, it's something that is not within my personal timezone.  Being stage IV means you have a small window of energy and my work life uses it all.  I might show up mid-day though, just to see what's going on.  If you see me, say hi.  I will be the one not wearing pink.

The event will be held at Mira Loma High School; if you want to race, pre-registration is here, or show up and register on site.

If you want to donate, it's not too late.

If you have questions, contact Daylene Perry at 916-807-5974.

In October, there will be another race, and I'm planning for there to be a team "But Doctor I Hate Pink."  I have a friend who will be in charge, in case I'm recovering from surgery.  More information to come but start saving your pennies.

Saturday, July 30, 2011

xkcd: Lanes

All of my children are addicted to the web comic xkcd. And, yesterday, I found it very relevant to me. They kindly allow hotlinking.   Click a couple of times to see the whole thing clearly.

Check them out:

Thursday, July 28, 2011

The BIG Day is coming

Navy Bean to the Rescue

I have my CT scan - the one that determines if my liver tumors have shrunk, on August 8th.

I see my oncologist to find out the news on the 17th.

Which is exactly two years to the date I was originally diagnosed with cancer.

I don't know what that means. Is it a sign? I mean, would it be if I believed in signs?

I was scheduled to have the CT tomorrow, until I realized that date still left several weeks until my doctor's appointment. I'd be missing chemo treatments that would keep whatever shrinkage I hope is going on - going on. So, I rescheduled. The more chemo, the better because right now, I'm assuming those good American Navy Beans are blasting those evil fascist cancer cells to kingdom come.

My rescheduling added one extra round of Navelbine before CT-day.

My nerves will be wracked until then.


Saturday, July 23, 2011



I know what you are thinking.

"Oh my God, you have that too? Is that what the MRI showed? How unfair can life be? Haven't you been through enough? What can I do for you: is clicking on the donate button enough? ---->"

Well, thank you, but actually, Oligometastases is a very good thing.

It's "a clinical state of metastasis that refers to restricted tumor metastatic capacity. The implication of this concept is that local cancer treatments are curative in a small proportion of patients with metastases."

Here you go, read to your heart's content.

And, there's more.

So, here is how the visit Wednesday with my doctor went:

As expected, my MRI showed nothing. In all his 80 years, Hugh Heffner hasn't inspected any pelvic region in as great a detail as my oncologist has inspected mine, so I'm just going to have to live with this back pain. But, I have a new theory about the cause that I'll post later.

My doctor asked how I was doing on the Navelbine, and I said fine, it's a pretty easy chemo. He said he liked to use it because people rarely have problems with it. Then he said that we'd rescan me in three weeks to see how my liver was doing. He'd see me in a month (on August 17th), and if it didn't work; if there was progression, than he'd switch chemos.

I asked him, "What if it does work?"

I mean, duh, let's not be negative here.

I added, "Do you think I'll have radiofrequency ablation?"

He said no, that if the chemo worked and my tumors shrank, he'd send me to UCSF for a surgical consult. Since they are treating me with "curative intent," surgery has a better outcome.

Did you hear that? "Curative Intent!"

That means, in case you missed it - he thinks I could be cured. I could be one of the .00005% of people (or whatever) with mets who actually don't die of it. Or, at least, don't die soon - the five year survival rate jumps to 40%, according to one study, and I don't think they even do ten year studies.

Talk about winning the lottery - the highest stakes lottery of them all, I might add. I'll never be able to complain I don't win things, ever again.

Okay, I know that I'm a long way from cure and I know the ups and downs of this disease. My scans might not show regression and, indeed, might show tumor growth. But, now I have something to keep my fingers crossed for, because it could possibly mean a much longer life than I thought.

I have a lot more husband-nagging to do, I can tell you. I have a feeling my plan of writing it all down for his future use wasn't going to work.

Open this note after dinner: "Honey, please wipe up the water off the counter, you always forget." Nope, I bet those notes would go straight into the garbage.

Looking far ahead, a liver resection looks like a brutal surgery with a couple of weeks of hospitalization, and to have it in San Francisco, away from my family, well, it would not be fun, especially if the nurses treat patients anything like they do here. Family visiting San Francisco on weekends would be expensive. (Hence the donation mention. I'm just trying to get you used to it for the future, in case the amazing does happen and I need a little extra to fund it.)

It would all be worth it though.

My white counts are very low and I'm back on leukine. My oncologist and I chatted a bit about going to the California State Fair. The food specialty this year is a maggot melt. Oh yes, you read that right.

He said that thought of that specialty grossed him out, even if it tasted good - knowing what maggots feed on.

I agreed.

I told him my goal was to stay as far away from maggots as possible.



Tuesday, July 19, 2011

The Taffy Box

A year or so back, I met a group of cancer patients in Chicago. It was a very enjoyable trip but I had just had my last chemo a few days before. I was just growing my hair back, and had almost no energy to see the city. Still, thanks to a friend who lived there, I got to take the "El" and I also got to eat the famous Chicago deep dish pizza.

One of the highlights of the event was meeting the other cancer patients. One was very pretty women named Koryn, and we had similar cancers. She was a bit ahead of me in treatment - she was able to go out with the others and do some sightseeing, while I had to stay in my room with room service. It turns out, we had ties although we live thousands of miles apart - I'd sat next to her cousin in my chemo room a few times, and her cousin worked for the same school district I do.

Small world.

She and I have kept in touch since that day. She, thank goodness, has remained healthy, although suffering some side effects leftover from treatment, as we all do. She was saddened to hear about my turn with mets, of course. I know she has fears that she'll end up like me, as all cancer patients do. I hope that she does not.

Occasionally, I get some lovely little item in the mail, and it's from Koryn. I can't tell you how grateful I am to know she's thinking of me.

Turns out, she makes jewelry and the items she sends me are from her shop. Knowing that, I thought I would share it with you. I've seen the quality of the items first-hand, and can vouch for their beauty. Of course, they don't all relate to cancer.

If you are looking for a personalized gift for any occasion - or are starting to think ahead to Christmas, then here is her spot:

The Taffy Box

I don't get anything for promoting her site (she doesn't even know I'm doing it) except the big prize - a friendship with a lovely woman.

Sunday, July 17, 2011

Dying to Do Letterman

Okay, I know what you are thinking about my title above. You are totally wrong - you are putting the emphasis on the wrong word. Plus, I don't find Letterman attractive in the least.

Dying to do Bourdain would be a much better title for any post of mine.

But, it doesn't have anything to do with that either, so get your mind out of the gutter. You all know cancer took my hormones away, so all I'm really dying to do is nap.

Back when I was a little girl, I was a Johnny Carson fanatic. I stayed up every single night watching him, which explains my grades. When I was a kid, maybe 9 or 10, I would sneak downstairs after my parents went to bed and turn the TV on so quiet that I had to put my nose against the glass to hear. I still remember Johnny as being a black and white pixelated glow.

When I was a teen, we had a TV on a rolling cart that we could move from room to room in the upstairs of the house. Being the oldest, I confiscated the cart, and night after night, I watched Johnny. I am guessing I didn't miss his show for at least 15 years, which is pretty pathetic if you think about it, and probably explains why I had my first child at 28, unmarried. By then, I might add, Letterman was in his early days, and breathtaking in his humor. But, in my mind, he was no Johnny.

Naturally, I had dreams of becoming a famous actress and appearing on the Johnny Carson show. Doing movies and plays didn't really interest me that much - being on Johnny's show? That's what I wanted to do. That was the epitome of success. I would dazzle him with my beauty and brilliant wit, and he would chuckle at what I said and light a cigarette at the end and whisper to his producers to have me back soon.

Odd that it never occurred to me to train an animal or something; that would have been a lot easier way to get on the show.

Anyway, back to present day: I got an email from a documentary production crew person (or something, my knowledge of the inner workings of the movie business vanished when Johnny went off the air) informing me about a documentary called "Dying to Do Letterman."

They didn't contact me for my Hollywood connections, which are tenuous at best (although I do have a friend with an Academy Award - there is something you don't know about me!) No, they contacted me because the movie is about a man, Steve Mazan, who is diagnosed with terminal cancer. His doctors estimate he has five years to live. And, this knowledge spurs him on to achieve the most important thing on his bucket list:

To do stand-up comedy on the David Letterman Show.

Mine is to clean my house.

Not only does he set this goal, he ends up with a documentary crew filming his attempt, which they turn into the movie Dying to Do Letterman. The movie has been in limited release and has achieved audience and critical acclaim wherever it has shown. It has won awards at film festivals.

And, they are competing for the big prize: an Acadamy Award.

Long time readers will know my blog is all about accepting you have cancer and finding the humor in it. My favorite type of film is documentary and Steve is doing exactly what I'd be doing if I was a stand-up comedian and/or if I'd thought if it first. His dream paralleled mine, and his cancer is also metastasized to his liver. So, I feel like we are twins (except for the part where I'm old enough to be his mother) and when they contacted me to give their movie whatever bump this little blog can, I was more than happy to do so.

Who does not love the idea of a guy realizing his time on this earth is finite, and then setting out to live his dream? And, no doubt discovering a few truths along the way?

Here is a video of Steve talking about the movie:

About Dying to do Letterman from Joke and Biagio on Vimeo.

It's not opened in Sacramento yet, but if you are local, love the concept as much as I do, and want to see it, you can leave a comment and I'll put you in touch with the people who can help you make that happen with their Digital Street Team. It'd be awesome to get a team of people willing to help show it at the Crest, don't you think?

And, if you do that, I promise to come out and watch it with you, creaking knees, aching back and all.

But even if you aren't in Sacramento, you can help:

If you love the idea of this movie, as I do, go ahead and like them on facebook.

If you want to be a big shot movie investor, go ahead and donate to their kickstarter campaign. (I think you get swag).

If you want the movie to show in your town, leave a comment and maybe the people in charge will contact you too. And, also, please bump this on facebook and twitter. A REAL movie about a person with cancer living his dream - well, we all can relate to that, can't we?

Guess what! I will be doing an interview with the one and only Steve Mazon soon. And, possibly the producers, Joke and Biagio, too. Then I can ask the question everybody in the real world wants to know about the movie world: What the heck does a producer do, anyway?

But first, I need to start on my dream. I think I'll begin with the kitchen.

"Honey? Go get the video camera."


Saturday, July 16, 2011

Surprise! MRI!

The machines must have missed me. It's been, what? An entire month since I've been in one?

This past week has been extremely difficult for me. I won't go into details, except to say it involved my car breaking down, $750.00, travel to another state, and lots of pain: some mental and lots physical.

Do you remember the worst flu you ever had? The one where your fever was so high you just slept for three days, sweating in your bed, head throbbing, with every muscle, every bone, every molecule of your body aching with pain? Well, I have that flu, only minus the fever, and actually, the flu.

My feet are also swelling up, just when I was back to wearing heels comfortably, dammit. I have fat feet.

And, my long-time nemesis, the lower left back/flank pain, has returned - in full force. I kind of love that pain because it caught my liver mets early, but hate it because it hurts me. Usually, it lives in the background and it's manageable with the pain meds I am prescribed. But, the past few days, it has been extremely intense, preventing me from sleeping and traveling down through my hip and up my ribs. You know how when you are having a baby, and they give you an epidural, and the pain goes away, except some unlucky people still feel it in spots? So, they labor on their left side or lower back only?

It feels like that, only my baby is 14.

I had my chemo appointment last Wednesday, and as always, reported my symptoms to my chemo nurse. Swollen feet, body aches and and intense pain in the back, and as I said that, a tear dropped.

Yes, me. My eyes wet. I cried.

I really hurt.

I surprised even myself though; I planned on being my cheery self.

They gave me a shot of dilaudid which slightly relieved the pain, but only slightly, it was that bad. The doctor even made a surprise appearance in the infusion center, and knelt in front of me to ask me what was going on. I told him how much my back hurt. I felt like a liar since the last thing I'd said to him about it was that I wouldn't worry about it anymore. He was puzzled. We know it isn't cancer because the PET came out clean in that area. He thinks it might be a nerve injury. He asked me if I'd had an MRI, and I said "no" but I have two CTs that showed nothing.

So, MRI it is: Lumbar Spine and Pelvis with Contrast. I think it could be kidney, I even asked my nurse if a kidney stone could last this long (he said no) but this test won't show who knows?


Friday was MRI day. I had a migraine when I woke up, and I took my second to last Imitrex shot. I just filled them and I can't fill them again for two more weeks, so clearly, this chemo is giving me migraines. (I don't want to think of the alternative). I had a two hour fast before the test, and my back was hurting, so I took my pain meds before the time I couldn't eat and drink. I read the paper and then took a hot bath to help ease the aching.

My headache returned as I was driving to the imaging center. I thought maybe I could just doze in the MRI machine and help relieve it. I arrived, filled out the same paperwork I have filled out dozens of times, and read Wired magazine while waiting. Usually I play on my iPhone or iPad but the screen was too bright for my migrainey eyes.

They took me back and I followed the drill. Undress, put clothes in locker, get on machine.

First, they did the lumbar spine and I was okay. My headache was pounding, but not terribly. But, when they pulled me out and told me to pee before they did the pelvic region, my headache increased. By the time she shot me up with contrast, I was in trouble.

Inside the machine, my headache grew as did my nausea. I concentrated on the air blowing across me so I wouldn't puke in the machine. I heard voices in the MRI, saying, "Health health health" and then "Die die die" and then "bye bye bye." I was having constant hot flashes and my back was aching and I felt so sick.

Really sick.

But, I didn't push that bulb, I stayed in the machine. Victory Victory Victory!

The test was over and the techs pulled me out. I immediately put my hands on my head, and they brought me an ice pack.

I got my stuff out of my locker and sat on the floor in the changing room and dumped the emergency meds I keep with me out onto the floor. I always keep a water bottle and drugs with me, so I picked out a compezine, two fioricet, and an imitrex pill and took them all at once. I got dressed, went to my car, and lay on the back seat with the ice pack on my head for a few minutes. It was pretty hot but I left the door open. When the nausea subsided, I got in the front seat, turned on the car for the air-conditioning, and lay the seat back, and sat there for about 20 minutes, alternating the ice pack between my head and neck.

Once I felt I could drive again, I put on sunglasses and went home. I came into the house, told my son to take care of the dogs, and injected my last imitrex shot. I went to bed and slept for several hours.

I'd promised to help my son with a project but didn't get to do that, which really disappoints me.

I haven't felt that sick in years. I've felt tired, yes. Exhausted yes. But, lately, I have felt sick. Terminally-ill type sick. I know it's temporary and I'll recover. As I write this, I'm sitting in my back yard, watching my dogs lie on the grass, listening to the fountain, back and legs aching but feeling okay. Gathering energy to make Gazapcho, my favorite summertime treat. Recovery is still possible but for the first time, independent me felt like I know what it's like to be incapable of taking care of myself.

The worst part is I'm not sure that MRI is going to show anything. I may join the groups of folks who have undiagnosed back pain who just have to live with it.

I feel sorry for you all.


Monday, July 11, 2011

Pretentious "Pinc Box"

I constantly get people wanting me to promote something on this blog.  As I have said before, sometimes I will if it has value to my readers.  Most I don't.  I have a post here outlining my philosophy about what I will and won't do.

I sum it up in this paragraph:

What I will not do is promote any charity whose focus is "awareness" rather than patient support or research. What I also will not do is promote your profit-making item if any donation you intend to give goes to a cause I don't believe in, or if you are donating "10%" to un-named causes. (Why is it always 10%?) Tell me what your cause is and show me your financials.

So, today I get this email (all misspellings and grammatical errors left intact):

Hi Ann,
I stumbled upon your blog and I was happy to see that you also support breast cancer. I wanted to share this infographic with you and your followers, so that we can help to educate and spread the word about the easy preventive steps to combat breast cancer.

Breast Cancer: Get the Facts, ties the importance society has given to how breast look with the lack of importance women have given to their own health. The bra industry itself is a multimillion dollar business and over 400,000 women a year choose to enhance their breasts through cosmetic surgery. And it's depressing to know that only 65% of women over 40 get a mammogram regularly. We know we all want them to look great, but let's make sure that they feel that way too.

Will you post this on your blog or Twitter to help women realize how important and easy it really is to prevent breast cancer? Please let me know what you think via, I look forward to your response!
Stephania Andrade
Off Site SEO Coordinator // FLANK MARKETING

I looked at their "infographic," which is just your normal get a mammogram notice with the stupid plastic surgery hook.

Anyway, I poked around their site some more and found the real reason for the email. They are selling a "Pinc Box" for sixty dollars. What's in the box? A bracelet made out of pink yarn and a couple of beads. A candle. A journal. Some lip balm. Some body cream. Some soap.

Sixty freaking dollars.

For crap.

But, it's all okay ladies, and you know why? Because:

To continue generating support for the community of survivors and those affected by breast cancer, Pinc Box pledges 10% of the profits from our awareness gift to Breast Cancer Research

I'm going to guess that the entire contents of their box cost wholesale, maybe 8 bucks. That leaves them with a 52.00 profit. Of that, they will give $5.00 for an unnamed cancer research.  It's a guess, but I bet I'm not that far off.

They say they will give money to "research."  I have my doubts.  Actually, I don't have any doubts, I'm pretty sure they are keeping it all for themselves.

So, to Stephania, who clearly has never read a word of my blog:  you are "happy to see that I support breast cancer?"

You are absolutely wrong.  I don't support breast cancer, I hate breast cancer. I'm going to die of breast cancer.  And, I'm sick to death of petty companies like the one that hired you, who want to profit off pain of women like me. You want to sell soap to exploit the suffering of our families, or prey on the fear other women have that they will end up like me.

It's cruel and evil to try and make a buck off the suffering of women, and I hope that someday, Stephania, you are in my shoes and know exactly what I mean.

But, it's not really Stephania who is at fault here. I did a domain search and here is the information:

Created On:12-Feb-2011 00:05:21 UTC
Last Updated On:13-Apr-2011 03:49:56 UTC
Expiration Date:12-Feb-2012 00:05:21 UTC
Sponsoring, Inc. (R91-LROR)
Registrant ID:CR75102746
Registrant Name:James Brennan
Registrant Organization:Flank Marketing
Registrant Street1:404 14th Street
Registrant City:San Diego
Registrant State/Province:California
Registrant Postal Code:92101
Registrant Country:US
Registrant Phone:+1.6197041707

Blog readers, I am calling on you to bump this post on facebook, and spread the word about this "pinc" box and tell people not to buy it.  If you want to buy your friend with breast cancer a candle, fine. I like candles too.

But, don't do it from a company who wants to profit on your friend's illness.  And, feel free to call James and tell him how you feel.


Well, Stephania, here is the blog post you wanted. I hope you like it.

I also hope you realize that by contacting me to promote your crap, you didn't do your due diligence.  I suggest you next try Gayle at Pink Ribbon Blues next.

She might really love your product.

Sunday, July 10, 2011

Read My Blog from Start to Finish - Easily!

I notice that newly diagnosed women find my blog and read the entire thing, from start to finish, which is quite the commitment - particularly with Blogger's setup - you have to go into the archives and click on each month, scroll down, read up, start again after seven posts... It's a big hassle if you want to read it all.

Of course, I'm worth it.

But, so are you readers.  To save you all time,  I found a hack that enabled me to put the each post in order, from start to finish and it should update automatically.  I put it on the top pages, above the Aqua Delight ad, and it's called Chronological Posts, (clever, I know).  But, since we're all about saving time - here is a link for you.

Even though I only put the titles, it may load slowly if you have an older connection, so beware.  There is a lot of content.

Also, to do this, I had to shorten my RSS feed, so I apologize to those of you who were reading that way.  But, I now have two feeds (I know, weird) and the feedburner feed is the full version, so you might just switch to feedburner.

I hope this helps some of you!  If you are interested in implementing this hack on your own site, instructions are at:  Too Clever by Half.

And, of course, if you encounter any issues, let me know.

Thursday, July 7, 2011

Things People Say to Breast Cancer Patients.....

.....and what I say in response.

.............and what you should say.

Well-meaning but clueless person: "Let me know if you need anything."
Snarky Me: "Really?  Thanks!  Empty your purse and let's see what you have in there. Wait, is that purse Prada? I need that, I have medical bills to pay and want to look good paying them. Oh, that's a pretty wedding ring, lots of diamonds, can I have that too?"

What you should say is absolutely nothing. This is a time to do, not talk. Pick up the phone and order a day  of housecleaning service. Send over a fruit basket. Knock on the door and drop off a casserole.  Come over and scrub the tub.  Pick up the kids from school during chemo week.   Bring a DVD of a funny movie and some chocolate.  Stay with her in the hospital so she will get good nursing care.  DO something, don't just talk about it.  And, when you stop by to help, don't be shocked if the house is a mess.  No judging -  the person has cancer and maybe can't move her arms, and housecleaning is far from important.  Just  help, and don't ask permission first.

You don't really think we are going to pick up the phone and ask you for help - do you? Would you? If you don't want to do anything (and there is nothing wrong with that)  than here is the right thing to say:  "I'm sorry you have cancer."  No meaningless additions needed.

CP:  "You are so brave"
SM: "Wow, how did you know about the child I rescued from the burning building last night? It wasn't even in the papers!  Oh, are you referring to the time I went to war and fought for my country and got in the firefight and dragged my injured friend to safety? Or, do you mean the time I single-handedly stopped a bank robber from shooting that elderly lady?

No? You are referring to me showing up on time for doctor's appointments?"

It's nice to be called brave, but we cancer patients all know we aren't. Brave is a word best reserved for people who deliberately put themselves in harm's way.  Trust me, if I could get out of this, I would.  I'd run so fast I'd leave old people and children behind.  And puppies. All the puppies.  The truth is, I have no choice but to put one foot in front of the other and do what my doctors say.

What you should say:  "I'm sorry you have cancer."  If you must add another phrase, you can say, "You are handling this difficulty with grace."

Then order housekeeping service, because I am guessing what is going on in that bathroom isn't that graceful.

CP:  "I know exactly how you feel."
SM:  "Oh fantastic, let's talk about the best way to relieve chemo-induced constipation without bringing on diarrhea! What's your tip?"

Here's the right thing to say:  "Tell me how you feel?"  And, then listen.  I'll probably say I'm fine.  Because, I am.  But, someday I might not be.  And, if I want to tell you that my butt is plugged like a 2 year old tube of super glue, than try to listen without telling me about the time you had the same experience.

CP:  "Oh, my Aunt Sally died of that."
SM:  "Oh cool, was it a long, painful death?  Tell me all about it!"

What you should say:  "I'm sorry you have cancer."    If you think I'm going to relate to you because you had relative who died of my disease, you are thinking incorrectly.  I'm well-aware this disease is fatal but maybe I'm in a good mood - don't bring me down.

CP:  "You never know, you could get hit by a bus."
SM:  "Our school has cancelled busing, thanks to budget cuts, so the very real risk of a bus crashing through the front window into my office has been eliminated.  Whew.

Here is a fact:  40,000 women a year die of metastatic breast cancer.  I'm not quite up on how many people die by getting hit by a bus each year, but I'm guessing it's more  in the 40 range.  (You might have to include trains in that too).  Which do you think is more likely for me?

What should you say? "I'm sorry you have cancer."

CB:  "At least you get perky new boobs."
SM:  "Honey, you have clearly never seen reconstructed breasts.  Trust me, nobody is giving me any beads during Mardi Gras."

Try, "I'm so sorry you are going through this."

CB:  "You can beat this!  There are great treatments now."
SM:  "Which one do you think will keep me in remission longer?  Navelbine and Herceptin?  Should I switch to Xyloda and Tykerb?   Should I ask for stereotactic body radiation or radiofrequency ablation?  What do you think about portal vein embolization?"

There are great treatments now. Some which keep cancers at bay for years.  None of which - to date - cures a woman with metastatic breast cancer. And, I'm guessing you have no clue what is out there for metastatic breast cancer patients. How about saying, "I hope you find a treatment that is easy, and I'm sorry you have to go through this."

CB  "Just keep a positive attitude"
SM: "Don't worry, I'm so busy concentrating on controlling the rivers of diarrhea without needing a diaper, my blood levels being so low I can get infected if my dog sneezes, and vacuuming up the peeling skin on my hands and feet that I'm too busy to think negatively."

It's awful to tell somebody to think positively.  Do you think all those cancer patients who are now dead thought negatively?  It's not a good thing to put the burden of our disease on us.

CP:  "Don't worry, everything will be okay."
SM:  "Oh, great! Did you read that in the tea leaves?  Was it in my horoscope?  Do you have a crystal ball?  Can I see?"

What you should say is....say it with me....."I'm sorry you got cancer."  Don't deny our reality.  It's very likely that - for those of us with metastatic disease - everything will not be okay.  We hope it will.  We want it to be and we are going to do everything in our power to live as long as we can.  But you have no idea what will happen.

CP: "Hey, look what happened with Lance Armstrong."
SM:  "I know, I only wish I'd gotten cancer of the balls!"

The truth is, while not taking away from Lance's story, his type of cancer has a high cure rate even at a later stage.  At the last stage of testicular cancer, Stage III,  there is a 50% to 80% five year survival rate.  At Stage IV breast cancer, there is a 16% to 20% five year survival rate.  So, yeah, look at Lance.  So what?

CP:  "So, how ARE you?" (Grave voice, sad face)
SM: ""Fine thanks, and you?""

I'm still the same person, please talk about me behind my back like you are supposed to. When in front of me, put on your unconcerned face.

CP:  "Everything is going to be fine."
SM:  Why yes, everything will be fine. After I die, the world will still turn on its axis, people will get born, people will grow old. Flowers will bloom, rainbows will sparkle. I won't be there to see any of it, but sure, it'll be fine.

At least, until a moon-sized asteroid crashes into the earth and kills you all."

Here's the truth.  You can say any of those things to me, and I won't mind.  You know why?  I lived 50 years without having cancer, and I probably said them all to somebody who did have cancer at some point too.  Nobody really knows what to do or say, and that's part of being human.

The thing is, We With Cancer are just the same as we always were.  We aren't braver; we are just sick.  We have the same hopes and dreams.  So, just treat us normally, as you would want to be treated.  Please, ask how we are doing and then take your cue from our response.

The one thing you should never do is put the onus of our illness back on us.  We didn't cause it by negative thinking, by eating a hotdog when we were 12, by sitting in the sun, or by not exercising.  It just happens.  I am positive in spirit but that won't cure my cancer.  Neither will being negative kill me.  It's not my fault. Never deny our reality, whether you agree with it or not.

When all else fails, what do you say to a person who has cancer?

"I'm sorry."

Tuesday, July 5, 2011

Amazon Affiliate Program - thanks for the memories

I don't like to talk politics on this blog (much), because we all have different ideas, and it's really not why I'm writing it. I believe that even though people disagree about the way to solve the world's problems, political beliefs are really not the most important factor in human relationships - but since not everybody feels the same way, it's not a nerve I feel is worth touching.

So I'm warning you now - this is a strongly-worded post about California and our universally despised elected officials, and you can skip it if you want.

Thanks to the greedy, ineffective, and corrupt California legislature, who will never be happy until they steal every single penny out of the pockets of hard-working Californians, the Amazon Affiliate program for Californians has been cancelled.

California’s legislature passed a new sales tax, to be collected from online retailers that have affiliates in the state. In reaction to this, Amazon announced they are ending relationships with their California affiliates to avoid having to collect the tax from customers.

It is unconstitutional to force Amazon to collect sales tax as long as Amazon has no physical presence in the state. Affiliates, like me, live in California. To keep costs down for everybody, Amazon killed the affiliate program so the law won't apply.

This law was lobbied for by Target and Walmart, of course. Our smarmy legislature will always do the best for whoever lines their pockets, and they have demonstrated over and over that they don't care about the people they are supposed to represent. Due to their petty interference, tens of thousands of small businesses and micro-businesses, like mine, are now gone.

Now, I didn't make a fortune on this. I didn't work very hard at it, mostly because I don't want to inundate my readers with appeals to buy this or that. However, I did make a few hundred dollars a year - enough so that I had a nice little nest egg at Christmas time. You know what I did with that money? I spent it right back at Amazon - on gifts. It was wonderful to have that little bonus and not have to worry about taking money away from medication and copays and gas to get to and from chemo in order to buy my family Christmas presents.

Now that nest egg is gone. Way to take support Californians, Jerry Brown and the rest of you elite, greedy, out-of-touch little pricks.

Anyway, I want to thank all of you who purchased items from my Amazon link - I really appreciate it.

If you want to continue to support this blog, please make your next water purchase be Aqua Delight, and tell them I sent you.

Monday, July 4, 2011

Happy Independence Day to my American Friends

To my British friends, neener neener, we won!  (And, aren't you glad?)

And, to the rest of you, I hope you are having a nice summer day.

If you live in a part of the world where it is summer, that is.

(Can't forget the international nature of the Internet).

Today is my favorite holiday but it's a lot of work.  I always have people over and even though I keep the menu simple, (hotdogs, grilled chicken, potato salad, watermelon, strawberry shortcake), it's true that cleaning the house, shopping, etc seems to take 100% of my energy, especially now as I am at my nadir and very tired.

But, tonight I will have some ice tea, eat a hotdog and a piece of chicken, and enjoy my family as they set off fireworks.  Another warm summer evening spent exactly the way I like to.

I have often said that when I die, don't bury me.  Cremate me and shoot me up in a firework on the 4th of July.   I love this holiday, and it would be nice to have my memory come twinkling down to earth.

Although, with my luck?

That firework would be a dud.


Saturday, July 2, 2011

The Happiness Bully

As a secretary, I see the UPS guy a lot, probably several times a week.

Our regular UPS guy is one of the most annoying human beings in the history of humans, and I'm including Gilbert Gottfried in that list.

He is relentlessly, single-mindedly optimistic.  But, not in a good way.  He is a one-way trainwreck of false positivity - so assertively happy that you end up thinking something has to be seriously wrong with him.

For six years, I've been having the same conversation with this man.  He hands me his device to sign for a delivery package and says,

"Isn't this the best day you've ever had?"

At first, not knowing him and as a polite person, I would agree.  "Oh, yes, it's lovely."

And, he would say, aggressively, "Lovely?  No, it's the very best day in the history of days, isn't it?"

Being a normal social being who wasn't going to argue about what day might be the best in history, I would say, "Yes, it's a great day."

Occasionally, he'd vary his patter, "What a great day.  Aren't you happy to have a day like this?"  And, I'd always say yes, but that wasn't good enough.  He'd challenge. "You'll never have a better day, isn't that right?"

The man is a happiness bully.

After a year of this, I decided to try and see if he could take another human being's feelings into consideration when pushing his Best Day philosophy.  "Yes, it's a fantastic day, but I have a terrible cold."

"Aren't you happy to have this day with a cold?"

"Isn't this rain the best you've ever seen?"

"Isn't this power-outage the most wonderful one that ever existed?"

He never smiles.

A few times, I'd ignore his happy-day question.  But, that wasn't acceptable; bullies don't allow you to let things go.  He would repeat his question, insistent.

"I said, isn't this flood the best flood that ever happened?"

After a while, I started to avoid him.  When I saw the truck pull up, I'd grab the phone and pretend to have a conversation so that I didn't have to talk to him. I'd rush to the bathroom and let somebody else sign.  I'd act engrossed in paperwork and not look up.

Eventually I accepted a promotion at a school not on his route, and I didn't have to see him again.  I was relieved.

When I again got a promotion, this time to high school, I was back on his route.  My heart sank when he walked in.  Despite my remembering him, he, naturally, had absolutely no idea who I was.  People are not important to him, except for their usefulness in validating his philosophy that every day is the best day ever.

The other day I was back to work after chemo and feeling a bit tired and cancerish.   I saw his truck pull up, and I sighed.

Really?  Now?

I decided to try an experiment.  I was going to extract a glimmer of feeling from that guy - a tiny speck of humanity that showed he knew that not every day is the best day of a person's life.

I was going to play the cancer card.

The guy came in and recited his line,

"Isn't this the very best day you've ever had?"

I shook my head sadly.

"No?  What do you mean?  This is the greatest day ever; the best you'll ever have!"

"Well," I said, looking downcast.   "It's looking like I won't have that many days left."

"What does that mean, there are always more great days!"

"Well, no.  I have cancer."

He hesitated.

"But, you are going to be cured, right?"

"No. I've just been diagnosed with Stage IV breast cancer.  I am going to die."

Will it work?  Will he get it?  Will he show a glimmer of compassion?

Will the idea that bad news can happen, that not every day is a perfect jewel, sink in? Will he realize that it is okay - even human - to experience and accept the downside of life, and that it doesn't mean you are vulnerable or there is something wrong with you?

Will he say, "I'm sorry you got such bad news"?

Will he be humane?

What do you think?

Here's what he said upon finding out I had terminal cancer:

"Well, they have great treatments now and don't you think this is the greatest day - ever?"

Cancer card - Fail.

Reaching the human heart?


Being ADD, being me,  I live each day as it is.  I don't plan much, I never have.  I don't worry about the far future.  Nobody has ever had to teach me to smell the roses.  Every day, I walk outside and see something beautiful, and appreciate it; the light shining through a leaf, the curve of my son's cheek, a baby laughing.  Sometimes I'm sad, sometimes I'm scared, sometimes I'm angry, lots of times (my family will attest) I'm irritated.  But, each day does have value.

He's right.  We only have one day.  But life,  in all its infinite beauty, has sad moments too.

Is every day the greatest day ever?

Not on your life.  And, there is nothing wrong with acknowledging that.


Friday, July 1, 2011


Maybe you didn't know this about me, but I'm a surgery/medical buff.   There used to be a surgery channel, do you remember that? They'd just show surgery after surgery: heart surgeries, colon surgeries, amputations, etc - just a camera in an operating room with the doctor narrating what he was doing.  I could watch that all day.

Eventually, the channel morphed into Discovery Health.  At at first, they still showed surgeries, but then they started focusing on medical curiosities, like the woman with the 300 pound tumor.  Then, they got away from medical stuff altogether and started airing shows like World's Worst Teens or My Monkey Baby, which is about, you know, a lady who treats a monkey like a baby.

At least, I think it's a lady.

Discovery Health became a Carnival Freak show, which, by the way, I adore.  But, I missed my pure surgery.

Maybe I'm the best possible person to get a disease like cancer because I find a lot of this stuff really interesting, even when it's happening to me and hey, at least I don't have a 300 pound tumor.

Or a monkey baby.  Or a bad teen.

Once I accepted (after the pain of Navelbine) that I was getting a port, my goal was to get it in my arm and not my chest.  Nobody seemed to think that was possible but I've read enough to know that many people do have it placed in their arm, and I was determined I would too.

Why did I want it in my arm, you are wondering?  Well, first of all, every single very skinny person I've talked to who has a port in their chest finds it uncomfortable.  Many have said it's the worst part of their chemo experience, and they can't wait to get it out.  (Stage IV alert: I probably won't be getting mine out). It also gets in the way of seatbelts, bra straps and clothing.  Plus, I have always had a phobia about stuff touching my neck and so I wear lower-cut shirts and it will always show - marking me as a cancer patient.  I sleep on my stomach (at least, I hope to again some day) and I don't want anything rubbing against that port.

I felt a port in the arm would be easier to hide with sleeves, and would be more comfortable and finally, others who had it in their arm preferred it and recommended it to me.

So, when I made the port appointment, I made sure to mention I wanted arm placement, and asked her to write that on my paperwork.

When they confirmed the appointment, I again mentioned I wanted it in my arm.  I was, at that time, told no, it would be in my chest.  I again asked her to write down that I wanted it in my arm.

When I went in for the appointment and the nurse did the workup, she told me I would be getting it in my chest.  I told her I wanted it in my arm.  She said they didn't do it that way.  Not to be deterred,  I told her I have seen them in the arm and had requested it.  She said she'd check with the doctor.  When she came back in, I was told that yes, it had been written down and the doctor would be putting it in my arm.


I was given my IV, put in a waiting room and the doctor came in to talk to me.

(Why are doctors these days all so cute?  When I was young enough to snag myself a doctor, they were all old grey-haired dudes, and who was interested?  Now it seems that every doctor I encounter should star in his own TV show - and are young enough to give me grandchildren.)

Anyway, he showed me the device he was inserting into me, and he explained that he would put the port anywhere I wanted.  But, the reason they do it in the chest is there is a slightly higher risk of thrombosis  when placed in the arm.  He also said that the tube has longer to travel in the body to get to the Vena Cava and so the risks of kinking might be increased.    But, he said, in Cleveland where he is from, he's done hundreds of them in the arm, and I'd be fine.  I considered changing my mind - but I asked him to show me on my chest where the port would be and he hit a spot I knew would be trouble, so I said "put it in the arm."

I always was a risk taker.  Anyway, it would go on the left side, opposite the mastectomy side.

As he explained the surgery to me, he unconsciously tied the port he was holding into little knots, and I sincerely hoped that was not the same one he'd be putting in me.

Anyway, he left and they prepped me.  I put on a gown, they gave me a surgical hat, put an oxygen nasal cannula on me, and wheeled me into the operating room.

I was so thrilled!  I was going to be awake for a real life operation!

On me!

I was positioned on a table under a fluoroscope.   There were two nurses in there, and they took my arm and washed it with some very cold cleansing solution - it was blue so I assume it wasn't betadine.  Then they draped me with a blue tent, with a plastic viewing port in it that was way over to my right side.

I complained.  I couldn't see anything but the wall, and I wanted to watch the operation.  They nurses told me that the doctor wouldn't like that but they moved the drape and my viewing port so that I could at least see the image on the fluroscope, and explained what would happen with that.  Apparently, it's operated by a foot pedal and when he needed to see where the tube was going he'd hit the pedal, just like an old singer sewing machine, and the image would be displayed.

They gave me antibiotics via IV, finished up, and called in the doctor.   He came over and sat on my left side where I couldn't see him and told the nurses to drug me up with the conscious sedation, which is Versed and Fentynl, which has never worked for me.  And, it didn't this time either.  They asked me if I could feel it and I said no.  Then they gave me another dose, and I guess that was all they give because the doctor said, "Okay, I'm going to numb up your arm, little prick."

No, he wasn't calling me a prick.

They all say that. It must be medical school/nursing school 101. When inserting a needle into somebody, you are required to say, "little prick." Some people branch out and say, "little stick" or "little pinch" but it's always, universally - little.

Anyway, I could feel the little prick but that was all.  Nothing hurt but I could hear him talking about accessing the proper vein and then checking as it went through my body into the large vein.  And, I could see my heart and lungs and the thing threading through on the x-ray machine, which was very cool. I could hear him sewing me up and deciding it needed one more stitch and it was just like my old surgery channel days.  All I needed was popcorn.

And, I told them how much I enjoyed it too, and thanked them.

I highly recommend that everybody be awake for surgery, it's much more fun.

I had no pain that day and we went out to dinner.  But, in the middle of the night, I woke up in agony.  Bad, bad pain.  The local must have worn off.  I really thought something was wrong and maybe it was getting infected.  They had told me it might be "sore" and to take some tylenol but this was real, post-surgical pain.

I took something a teeny bit stronger than tylenol because I had a busy day. Two doctor's appointments and a business meeting. But, I skipped going to work in the morning, I needed time to get the pain under control.  The next day, the pain had subsided to expected sore levels and I'm on day three now.  It itches, which means it's healing.  And, that port feels heavy in my arm.   I go in for a "port-check" today and get the bandage off and I can finally shower.

I had Navelbine through the port the next day and my arm didn't end up with that deep ache as it did after the last infusion, so I guess the port is doing its job.

More importantly, I was the star of the infusion room - all the nurses and even a couple of patients crowded around to see the oddball with the port in her arm instead of her chest.

Maybe Discovery Health will do a show about me.