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.

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:

http://xkcd.com/931/

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.

.

Oligo....wha???

"Oligometastases"

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.

"Oligometastases"

.

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.

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."


.

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 kidney...so 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.


.