Only Mostly Bald

If there's anything more disturbing than seeing your reflection with a mostly-bald head for the first time--it's having it combined with puffy, red eyes.

On the upside, my hairfall of last Wednesday stopped by the next day, leaving me with only slightly-thinned hair. Which meant I was able to spend Thanksgiving Day hatless and normal. Made me really glad I hadn't shaved.

It started again on Saturday night. Mostly just on top. The fam assured me it was fine, so I refrained from wearing a hat at dinner. Brandon graciously told me it wasn't that bad. That I just looked like a hairy coyote. He was trying to be nice.

It was before going to bed that I got a good look at the partially-bald head, surrounding eyes that were the result of crying off and on all day. I guess something like this, at least in a ten-year-old's eyes:



But the serious shedding didn't start till Sunday morning. I got in the shower, thinking I could just get it over with. After several minutes of scrubbing I was covered with hair from head to toe, bawling, and determined I'd just need to shave the rest. Except it turned out there wasn't all that much missing. There's way too much scalp showing on top to get by without a hat in public (at least without feeling self-conscious), but the sides and back are still full and normal. Again happy I was too big of a wimp to just shave. Both the shedding and the tears have (mostly) stopped, for now. And I look pretty normal in a hat.

The doc assures me the rest will come out next time around, at least by Christmas. But for now I'm counting my blessings.

And for the morbidly curious, here's me, as current as pictures can get, in my second round of chemo, both with a hat and without. Don't ask me what's possessing me to post these. I guess all that journalistic training. But I'm thinking I better push the post button before I totally chicken out.

Is it raining?

No, that's just my hair, falling out strand by strand. I'm told by those who have come before me that the least traumatic thing I can do is shave it all right now. And I'm sitting here thinking that sounds like anything but less traumatic. I don't know. the razor may come out in the next few hours, but for now I'm too intrigued by the process, and nervous, to consider anything else.

Last night just before dinner I ran my fingers through my hair and came away with about a dozen strands. I cried a few tears, pulled myself together, and bravely announced over the dinner table that it has begun. Went to bed in a hairnet, to avoid the tales I've heard of waking to a pillow covered in hair. But not a single strand had departed over night. Then just now I ran my fingers through again and came away with a complete clump. I've since started a small pile. A little morbid I know. That's what my daughter tells me anyway. But it's how I'm dealing with it. And I get to deal with it any way I want.

And while I'm on the subject

I just posted below about how I'm a writer. How I kind of forget sometimes. So I after got done smacking my head, and writing a couple of reviews, I dusted off the manuscript I was working on before this all hit me. And then I remembered an email that should keep me going. Came from a friend/family-member of mine who read the manuscript. Now I know copying it here sounds like total bragging. And I don't mean it to. It's just too funny to not share. It goes like this:

"Suzanne, you are killing me! Holey buckets! How do you come up with this stuff?! I'm all tied up in suspense and trying to figure out what the heck! I just finished chapter 23 and want to keep reading, but HELLO! 12:29 a.m.! Aaarrrrgh! Yeaeaeioueauooouieeaaeeeeeeesh!"

That's the stuff we writers live for. Now if I can just get somebody to publish it!

Once Upon A Time

I remembered something today. I'm a writer! You know? That thing you do when you sit at a computer and let your fingers dance over the keyboard? I mean, sure I do that blogging. But ever since the big CANCER word entered my life, it seems that's the only thing I use my flying fingers for.

So...with a huge apology for the delay, I have some reviews to write! Because Shadow Mountain sent me these books with the full intention of seeing a review out of them. In fact, in cyberspace right now there's a new blog (almost) ready to be launched, dedicated to nothing but books and reviews and writing and such. But I can't quite get the header right, and in the meantime these great books don't have my review. So with all that adieu, I'm going to post them right here, on this blog. They don't have anything to do with cancer, and if that's why you come visit, I promise I'll get back to that dreary subject soon enough. But for now, grab a cup of hot chocolate and curl up with one of these books.

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Rachel Nunes took on a difficult and ugly topic in her latest novel ‘Saving Madeline’, showing the possible heartbreaking results of the combination of meth labs and children. Her characters are likeable and sympathetic—especially the precocious child Madeline and the mentally handicapped Amy. Even the drug-addicted mother Dakota is portrayed in a complex light that makes it difficult to judge too harshly. The story is fast-paced and intriguing throughout. Nunes deserves high praise for her handling of a topic that needs wide-spread attention. You won't be able to put it down until you find out what happens to poor Madeline.

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My favorite thing about G.G. Vandagriff's 'The Hidden Branch' is that it doesn't try to take itself too seriously. The character of Briggie is as fun as her name sounds. She's a senior lady who lands in jail more than once, yet none of her friends seem nonplussed by the news. And even though the story is whimsical at times, there is some serious action and intrigue. There are plenty of characters, which means plenty of suspects and plenty of reasons to keep turning pages. If you read my review of 'Last Waltz' you know that I think Vandagriff is one of the best authors around. 'The Hidden Branch' shows that she's able to adapt to multiple genres with amazing skill.

Still Hair

I'm pleased to report that I've felt more and more like a human being each day since my release from the hospital. Yesterday I folded and put away a mountain of laundry, went hot tubbing with the youngest two kids, did a big shopping a Super Walmart, and made dinner, all before declaring myself out of every last reserve of energy.

I have three events listed on my calendar for tomorrow. The first says "maid service". The Utah Cancer Foundation sends a cleaning service out for free to chemo patients. I'm extremely fond of the Utah Cancer Foundation.

The next item is "Poetry Contest". Brandon has advanced to the semi-finals in a poetry-reciting contest at his school. Not surprisingly, he picked a song that can be sung. It's called 'My Favorite Fibs' recited to the tune of 'My Favorite Things'. A perfect combination with his soprano voice and mischievous smile.

The third item is "Mom's Hair Will Fall Out". It's literally written on the calendar in a ten-year-old script. Happens to be the day they've predicted the hair will come out, though it feels firmly in place today. Brandon is both fascinated and appalled with the idea. So am I.

Home Sweet Unsterile Home

I'm pleased to report that my little vacation stay at the hospital ended on Tuesday, though germ-wise the hospital was probably a bit safer than my home. Both hubby and son had developed sore throats and coughs during my absence. Hubby was banished to a spare bedroom, and son was whisked away to a neighbors. (Don't worry, he's been allowed back home.) The whole fam has been pumping themselves with vitamins. And my immune system is not nearly as fragile as it was before. So I'm just trying to relax, though the hand sanitizer is never far.

I was just reading a blog entry about first memories, written by a beautiful friend of mine. (Her blog is new and fascinating: http://thenarcichronicles.blogspot.com)

She poses the question of why our brains lock on certain events in our early years. What is it that makes one particular moment stand out above other moments? If we look at our first few very early memories, they most likely point to something that is of value to us as adults, perhaps help us learn a little about ourselves. She gives the example of a relative whose first memory is running to the aid of a little sister who has skinned her knee--and the nurturing that women has done in her adult life. My friend remembers watching her dad mow the lawn, and even as a 3-year-old noticing the careful, perfect job he was doing. She became an over-achiever who strives a little too hard for perfection.

This made me think back to my own first memories. There are three that stand out as most vivid. In the first, I was about four, playing at the bottom of a large hole behind our house. It was about the size of a swimming pool, and had been dug then abandoned by the city for some industrial reason. My mother hated that hole. I thought it was the best thing ever. On this particular day a friend and I were playing with trucks at the bottom (lady-like I know) when some "big" kids (they must have been 7 or 8) came by, looked down at us from the edge, and told us we weren't allowed to be down there. I remember standing up, squinting up at them with my hands placed firmly on my hips, and telling them that this was "our" hole and we could do anything we wanted with it. They shrugged and went on their way. I thought I was the toughest thing ever. I'm not sure what they means about me today. Except that people keep calling me tough and I always think they don't know what they're talking about because really I mostly feel scared to death about all this.

In the next, I'm 3 or 4 and my big brother (a teenager) has just arrived home after a long absence. He has swept me up and is swinging me in circles. I just remember feeling so loved and happy.

The last is with that same brother and a bunch of his friends at a party in our basement. There is loud music. And beads. Lots of beads. This was the sixties, in a suburb just outside of San Francisco. I didn't realize at the time that they were probably stoned. (Still love ya, bro. Sorry Mom if you're hearing about this for the first time.) I was about 4, wearing flowered bell-bottom pants that were the coolest thing ever, and dancing atop a card table. I totally believed them when they said I was on the table because my dancing was so amazing. The friends circled the table, dancing in their swinging hippie way, and one-by-one placed a strand of beads around my neck.

It's that memory that brings me back to my current circumstance. You have me doing my best to keep dancing, while being encircled with both drugs and a huge out-pouring of love.

As far as the analysis? I'll let you do that one.

Germ-o-phobe

I've been spending my time in this little "resort" getting caught up on my older kids latest television show craze--Glee. I find it wonderful in a disturbing kind of way, and could do all kinds of commentary on many different levels. But I'll just share that part that reminds me of my situation.

There's a scene where the character Emma walks stiff-legged into the boy's locker room, her arms held awkwardly at her sides. Her approximate words are: "I can't stay in here of course. The germs. And the smell."

The coach she's addressing nods his understanding. The woman is a serious germ phobe. She eats with plastic gloves on, just for starters.

And I'm feeling increasingly like her. Since I apparently have NO immune system for the time being, there's a sign on my door that prohibits live flowers or plants. Because of the spores. And fresh fruits and vegetables. Fortunately they haven't prohibited those giant germ caravans known as humans, but it's only a matter of time. Which is why I feel a little like Emma, standing uncomfortably in the locker room. "I can't stay here." I mean, this is a great facility, but it's packed wall-to-wall with sick people and germs. I should be anywhere but here.

I touched my NOSTRIL last night with my STERILE finger while preparing for bed. Gasped. And frantically began flushing the nose, willing back any germs that might have considered that an invitation to take a stroll. Seriously. I'm that bad.

That's when I knew the biggest difference between me and Emma is her big doe eyes. And that I know exactly how she felt when she walked into that locker room. I can't stay here either honey.

A Little Off-Course

So my little chemo buddies went the wrong way over the weekend, sending me to the emergency room with a fever. Apparently doctors like to keep you around when that happens. My white blood count is low, and they won't let me leave until it goes back up. No idea when that will be.

I was bawling when they wheeled me to my room, and the sweet nurse kindly says, "Long night in the emergency room?" I felt so stupid, couldn't even say why I was crying, so I had Rob do it for me. I was going to miss Brandon singing at church--a duet. I've been so caught up in this stupid battle that I haven't even heard him practice. Wasn't even sure what song he was singing. One more cancer robbery, dang it.

The Pacifier

Yesterday Whitney, Jen, and the grandbaby took me and my achy bones on a little walk.

(Let me apologize right up front to Jen. Since I only have one grandchild, anonymity wasn't possible. Love you Sweetie. Remember that.) Anyway, as we turned a corner, Ethan sneezed, propelling his pacifier several feet in front of the stroller. It then bounced ahead, down the hill in front of us. Jen calmly asked her sister to hold onto the stroller, then dashed after the bouncing binky. When she reached it, it bounced between her feet and kept going.

Jen apparently decided it was time to up her game--and began waving her arms wildly. When that didn't help, she started to yell. "STOPPP!!! STOP ROLLING!!!" She continued on her way, yelling and waving her arms, right past one of our new neighbors--who doesn't know us from the Addams Family. I turned away in embarrassment. But then couldn't keep from looking--like when you pass a car wreck--in time to see her trip over the binky again, arms flailing.

The binky made it half-way down the hill before she finally caught up to it and returned, triumphant. Between fits of laughter, Whitney helpfully pointed out that the pacifier probably couldn't hear her screams. I also helpfully added (while holding my sides) that it probably would have stopped on its own eventually. While she had to admit that was true, she defensively explained that it's the only binky she owns that her baby likes, so it's a huge priority to her.

Upon reflection, it's moments like that, Ladies and Gentlemen, that give me the courage to fight the good fight.

I only wish I'd had a video camera.

No more honeymoon

So the sweet delusion of thinking maybe this chemo won't be so bad came to screeching halt this morning. I did manage to sleep. But I woke up with the sensation that a criminal was standing over my bed attempting to smother me. When I tried to move, I realized it wasn't just my chest that hurt. It was bone ache from scalp to toe and everywhere in-between. I was still frozen in place, accessing the situation, when my poor, unsuspecting hubby entered the room and asked if I needed anything.

"Yes!" I pretty much screamed, my body pinned to the bed. "I need THINGS! LOTS of things!"

I then began barking out orders like a mad man. Pain meds. Water. Soft food. Warm bath.

The pain is being caused by one of the good guys. A new drug that goes directly into the bone marrow and protects my white and red blood cell counts from dropping. Knowing that should make it feel better. Should.

Hopefully the pain will start decreasing over the next couple days. And even more hopefully it won't be replaced by something even more gruesome. But for now I'm just sitting around feeling very chemoed.

Sweet Mood Music

The list so far: Heart burn big time. I have to eat with a plastic spoon cause metal makes the food taste funny. My mouth is dry. My bones hurt. And I keep falling asleep. Nothing traumatic, just a bunch of little stuff. But I think the fatigue is making me sentimental.

One of my beautiful daughters sent me this song a while back, right after my diagnosis, and I just pulled it up. Cries are good if they're happy ones. Right?

Human Today

Wow. I woke up feeling human this morning. And not just barely-alive human, but normal human. I do seem to burping a lot. And I have this strange craving for gum (which my children will tell you is very strange.) But other than that, I'm good to go. Drove myself to the hospital for a shot, then went to the store, then another, and another. Bought myself some killer hats. Then I stopped and picked up my grandbaby to give his other grandma a break while I'm able. Amazing stuff for the day after chemo. There are a bunch of side effects that are supposed to turn up throughout the coming days. But for now, I'll take human any day!

Me and Angelina Jolie

Okay - funniest story ever. Well, one of them. My hairdresser's 11-year-old son saw me and asked his mom if she cut my hair. He was very proud of her, and said it made me look just like Angelina Jolie.

I'm sure you've heard of her. That kind of super-pretty lady.





Yep. I can hardly tell the difference.

When I got done laughing I told her to give him a big squeeze. Then take him directly out and get his eyes checked.

Just Keep Swimming

At this very moment I'm in a lounge chair at the hospital with every comfort imaginable--Internet, relaxing music, aromatherapy, hot chocolate, a good book, pillows, blankets...and the first of three chemo drugs pumping into my veins. All good so far. Except for the steroids they started me on yesterday. I didn't even get drowsy last night, despite taking Ambien and a sedating pain pill. The doc assures me I'll make up for that tonight--I hope he's right.

They said something in our chemo class last week that stuck with me: Chemo is not the enemy. Cancer is the enemy, and chemo kills cancer. I knew that, but even so had been thinking of chemo as the bad guy. So I'm trying to think more kindly towards these drugs. They are saving my life after all.

And last night, when I had plenty of time to think, I finally thought of my 'visualization'. You may have seen the movie with Cher about a boy with tumor that he caled Planet Meatball? He routinely shot at it like it was the target in a video game. Well, at that same chemo class they encouraged us to use visualization as part of the battle. I'm told one lady brought a Wonder Woman doll to each of her treatments. Another used Elmer Fudd "get that rabbit". Personally that worried me, since Elmer always loses. But I've drawn a blank on my own ideas for a couple weeks--until last night I thought of Dory and Marlin from Finding Nemo.




Of course I've way overthought this--since I had eight or so sleepless hours to kill. But I figure the two of them are like two of my chemo drugs--the ones that kill any fast growing cells. (One gets the drugs that are sitting in wait, the other finds the ones currently growing. Haven't decided which is Dory and which is Merlin.) Sometimes they get a little confused and end up in the wrong places (like shark meetings or my bone marrow and hair platelets), but because of their persistence and dedication to the cause they succeed in their mission of saving Nemo (ie. lille ol' me in this case.) There's even the third drug, Herceptin, (the one I'm getting as we speak, and which possibly gets the biggest credit for saving my life--if it weren't for Herceptin my odds of this cancer coming back in a rage are like 50%). Herceptin doesn't kill cells, but tells them not to keep feeding ravenously on cancer cells the way they've been doing (as if it's chocolate or something)--kind of like the kindly sharks and turtles keeping the water safe for Nemo.

Besides, and most of all, they all make me smile. Just Keep Swimming, Swimming, Swimming.

Coconuts and Aliens

I decided to get a haircut. Really short--to help transition into what's to come. My girls helped me search for several styles, and I printed the favorites out on a paper to take to my hair dresser. My son saw the paper on the counter. "You want to look like an alien?" Turns out one of the styles was the lovely Morena Baccarin, the alien on the new TV series V. I could only dream of looking that good. Here's the actual alien cut:



I also got an expander fill this week. Not a big fan of expanders. Here's the recipe, in case you're interested: Divide a coconut in half. Place each side UNDER chest pectoral muscles. (You know, the ones that think they're supposed to lie flat, only because that's how they've spent almost half a century.) Breathe.

I've had a brain worm all week. (That's an actual scientific term: Brain Worm. You can look it up if you don't believe me. It's a song that's on instant replay in your head.) Anyway, I can't get rid of it. "I've got a lovely bunch of coconuts."



SIGH. At least it's all only temporary.

Hair Obsession

It takes a lot of work to stay healthy. I mean, not just normal healthy, but 'let's kick this cancer in the butt healthy' (Harsh language for me, I know. But we're talking cancer here. Time for tough talk.) Anyway with all the juicing, protein drinks, power breakfasts, supplements, ionic bath treatments, cardio workouts--the routine pretty much takes up my whole day.

But when I do get a few extra minutes, I inevitably find myself at the computer researching ways to save my hair. Not that it can be done--I'm assured with my kind of chemo it will come out. But there are plenty of snake oil salesman that would like you to believe otherwise.

Some methods are even pretty legitimate, just not very well researched. For instance, in 2001 some scientists tested a cream on some poor mice, then put them through chemo. And they only lost hair on the half of their bodies that didn't have the cream. The cream ironically slows hair growth. But since the chemo is seeking out cells that grow quickly, it apparently ignored the hair follicles that had the cream. And the best part is that you can wash it off afterwards and the hair goes back to normal. But I can't find a thing about that magic cream any more recent than 2001. Nada. Zip.

Then there are ice caps. Apparently they're widely used throughout Europe and Australia. Women sit with ice on their heads during their chemo sessions. Apparently the drugs don't like that climate and their hair stays in. But docs in the U.S. speculate that if the chemo drug isn't getting to the hair follicles, it might not be making it to the brain either. And as much as I would like to keep my hair, I DON'T want brain cancer even more.

Finally we have vitamin E. Anecdotal evidence shows that taking mega-doses of vitamin E right before chemo can sometimes either avoid or delay hair loss. And how easy is that, to just take a few vitamin pills before going in? But again docs speculate that antioxidants feed the cancer cell as well healthy cells. I don't personally believe that. And it hasn't been studied enough for there to be any definitive answers. But since I won't be getting a second chance at this game, I want to do it right the first time. My oncologist is ok with me taking antioxidants, just not the mega doses, and not right before the treatment.

So there it is, my dilemma and obsession. Can't ever seem to find an answer, just more and more questions. Meanwhile, the wig is ready and waiting.