But the horses are counting on me!

The Story of The Golden HIlls Mob Goes Blog:

2011-07-15T08:31:00.001-07:00

http://goldenhillsmob.blogspot.com/

Jewelry on Etsy.com!

2011-07-06T07:36:00.001-07:00

Finally got around to listing some jewelry on Etsy.com. I've only managed to get a few listings done, but there are dozens more to come! Check out my shop here:

http://www.etsy.com/shop/DunlightStudio?ref=pr_shop_more

Pictures as promised...

2011-06-28T12:28:00.000-07:00

Horse traffic jam coming down the hill...

Riser coming over for some attention.

Mixer and Johnny snoozing in the shade.

Mixer and Leroy doing what they do best...

Holly gives Mixer a refreshing shower midday.

Leroy...even just grazing, he's magnificent.

That's my baby girl, Lady.

Me with Lady...absorbing as much horse smell as I possibly can!

We finally made it up to see the horses yesterday!

2011-06-27T20:59:00.000-07:00

They smelled even better than I remembered. The first sniff was almost shocking. Not that I didn't remember it, but memory definitely didn't do justice to the richness of it. It's just simply the best smell on the planet.

Kirk chartered a plane for us, and we flew up in a little pressurized Cessna. Our pilot, Travis, was awesome. I was tempted to check his ID when he pulled up, but turns out he was 28, with ten years as a pilot. When I explained that we had six horses that we hadn't seen in six months, and we were flying up to see them, he said he'd grown up with horses, and loved them. (Major points in my book.) So when we arrived in Modesto, we asked him to join us, and he did. He was great company and obviously enjoyed the horses.

Holly and David were ready and waiting when we finally arrived. We all piled in David's truck, with Holly following on a quad, and headed into the hills to find the herd. The horses apparently have a daily route around the property, and David knew where we'd probably find them. Sure enough, as we rounded a bend, there were Mixer and Leroy, happily grazing on the side of a steep hill. The rest of the herd was close by.

I got out of the truck and called "Hey, Mixer!" I swear he did a double-take. He and Leroy just sort of stared at us...I can only imagine what was going through their heads, but I suspect it was something along the lines of, "oh, crap -- you're not taking us home now, are you???"

They all look spectacular. Climbing up and down those hills is just what a horse needs, and they're trim and solid. Their feet are amazing, and about as tough as the granite in those hills. Oasis Ranch is about as perfect a home for a horse as exists. And to top it all off, Holly and David brush them and pet them and pamper them daily. What more could a horse ask for??

Dune was reserved...I wasn't surprised; he warmed up later in the day, but poor Duney is pretty sure I'm just like all the others, and not to be trusted with his affection. Mixer, Leroy and Riser all took a little while to warm up. And to Lady I'm just somebody that comes by a couple of times a year. But ol' man Johnny marched right over to me when I called his name. (And he is doing fabulous -- a little thin, but in pretty darn good shape from those hills, and sound as ever!)

We hugged and petted and fussed over them most of the day. I got myself positively filthy, and it felt SO good. It was the best day I've had all year.

Pics and video to come...

The Big Picture...and Necklaces!

2011-06-22T21:08:00.000-07:00

I am here! I am here! Neglecting my blog, but creating jewelry like a woman possessed...

I know I've left you all hanging in regards to my bone marrow biopsy and to my treatment. So here's the big picture.

My bone marrow looks good. My chromosomes even look good (they were a mess before). And the myeloma related proteins in my blood are normal. This is all very good news, especially considering how severe the disease was when I was diagnosed (I had about 90% leukemia cells running amok in my bone marrow.) Using a procedure called fluorescence in situ hybridization, the pathologists identified a SMALL percentage of changes to my DNA that are markers for plasma cell leukemia. Researchers really don't know how indicative of relapse those changes are; essentially, if they hadn't done the FISH assay, I would be considered in remission.

I had already decided I did not want to pursue the donor bone marrow transplant. The potential benefits simply do not outweigh the risks (complications including graft-versus-host disease, in which the donor cells attack the recipient's body, not to mention the risk of infection from a severely compromised immune system) and the lengthy (about a year) recovery time. And I just could not reconcile the idea of another extended hospital stay - this one probably in the neighborhood of three months. But most importantly, the donor transplant would neither cure me, nor appreciably extend my QUALITY time.

It was not a difficult decision.

So now I'm just going to LIVE. As much like a normal person as I possibly can. For as long as I can.

Of course, there's the weency little problem of bringing in enough money to pay the tachycardia-inducing medical bills while I proceed to live my life. So I'll sign off with some images of my jewelry, which is all very much for sale, and will be listed on Etsy.com soon. (Also, I have both So Cal Complete Hoof & Mineral Blend and Thrush Ninja in stock!)

0069 - Green Turquoise Heishi & Shell Heishi Necklace (16")

0068 - Glass Seed Bead and Sterling Silver Steer Skull Necklace (16")

0067 - Glass Seed Bead, Turquoise and Cowboy Boot Necklace

0066 - Matte Gold Teardrops and Glass Seed Bead Necklace (30")

0064 - Amethyst, Copper and Turquoise Necklace (30")

0063 - Glass Seed Bead and Copper Tree of Life Necklace (30")

0062 - Sterling Silver Sand Dollar Necklace with Turquoise and Puka Shells (16")

0061 - Elephant Necklace with Carnelian and Agate (16")

0059 - Chunky Turquoise and Sterling Silver Starfish Necklace (16")

0060 - Jade and Rose Quartz Necklace (16")

0057 - Turquoise Heishi and Copper Cross Necklace (16")

YIPPEEEEEEEEEE!!!!

2011-06-16T16:25:00.000-07:00

Today the doc finally gave me the go ahead...I can go see my horses!!!!!! Best thing I've heard in six months. Not sure when we'll go, but it will be SOON, and I will be armed with carrots galore in case the herd decides to play hard to get with me. CAN'T WAIT!!!!!!!

Checking in!

2011-06-12T17:38:00.000-07:00

So, in my spare time, when I'm not working on the forum for my nephew's website, or walking, or making jewelry, I have become completely addicted to the "Pounce" button on Etsy.com. "Pouncing" displays a list of items that have recently sold....and if you're not familiar with Etsy, it's a website where people sell all sorts of handcrafted items. Some of it is really amazing stuff, and some of it is interesting simply because it's boggling that anyone bought it.

My hair is clearly on strike. Eyelashes too. Not that I blame them, but geez, it'd be nice to grow some fuzz.

Will be posting some jewelry pics as soon as I get them taken!

Corkscrewed again.

2011-06-08T16:38:00.000-07:00

But hey, after all the bone marrow biopsies I've had it's really no big deal any more. Not my favorite activity, and I'm gonna need some serious tattoos to cover up all of my various and sundry treatment scars. It also means I shouldn't go for a walk this afternoon, which SUUU-UUUCKS 'cause I didn't walk this morning and it's another beautiful day. But really, just another day in this very strange life.

Hope to have some jewelry done soon to show you!

I smell people.

2011-06-05T10:10:00.000-07:00

No, seriously, I am an olfactory freak. I can smell people. I'm not talking about body order (although I can certainly smell that, too, much to my dismay), or cologne or deodorant. And the really freaky thing is, I can smell them from about 20 paces, farther if the wind is right.

I read somewhere that in the grand scheme of odoriferous-ness, humans are a smelly species, and that's part of the reason that other animals tend to avoid us.

I'll buy that theory. I would much prefer to smell horses, or even dogs.

I'm guessing that this new "skill" is the result of the repeated purging of epithelial cells. The fresh ones in my nose are just extra clean and sensitive right now. I'm kinda hoping it's something that will fade over time.

If not, I could probably pursue a career in manhunts...

Great TED talk:

2011-06-04T15:34:00.000-07:00

Brene Brown: The power of vulnerability | Video on TED.com

I'm here!!

2011-06-02T19:10:00.000-07:00

Holy smokes, I didn't realize I hadn't posted anything in so long! No excuses...just been doing my usual thing, walking and working on websites and staring at pictures of my horses. Oh, and starting to think about making jewelry with my sister. She does really beautiful, unique stuff. I used to do a lot of sort of southwest stuff -- lots of turquoise. We're going to see what we can come up with that will appeal to the Coronado tourists.

As you can probably tell, being idle makes me crazy....of course there are still hospital visits at least every other day, which usually dominates a good 3 hours or more, but even there I have to be busy. I see so many people just sitting there during their treatments staring at the TV...novocaine for the brain, I guess. That would drive me positively batty.

Saw the doc today, and everything is going as it should. He wasn't worried about my incredibly annoying, lingering cough, and he even took me off of one of the prophylactic antibiotics. Yippee! Two less pills to take every day! (Which brings the daily grand total to around twenty...I've contemplated putting them in a bowl with milk and eating them like Cheerios....)

I feel like I'm recovering reeeeeeaaaalllly slowly, but they tell me it's perfectly normal. At least I'm through the fainting goat phase!

Time for another walk.

Quiet day.

2011-05-29T18:01:00.000-07:00

Oh, the tourists are NOT happy today! It rained last night, and it's been cold and windy all day. Decent weather for walking, though. Did my usual trek on the beach this morning, and Kirk and I just got back from a walk by the bay.

Poor Kirk had one of his gnarly migraines today, so I spent a quiet day at the computer working on some websites. Not much else to report here; we'll probably have a Scrabble grudge match later (Kirk was the Scrabble police last night. But I think he was making up his own rules...it's okay though -- Patricia and I still beat him.)

Back to the Infusion Center for labs in the morning.

Right now I think I'll raid the freezer for a pre-dinner snack of Ben & Jerry's!

I definitely prefer a sprint to a marathon.

2011-05-27T18:27:00.000-07:00

Well, in my usual "can't do anything halfway" fashion, it turns out I had not ONE cold virus, but TWO, simultaneously. Really...who knew that was even possible?? Except, of course, when your immune system has spent the last five months getting nuked to beat Fukushima.

Other than that, doc says I'm a little wheezy but doing good. I get a teensy bit stronger every day, although my blood counts are still doing the rollercoaster thing. Today I needed another neupogen shot to boost white cells. By Monday I'll probably need hemoglobin and platelets. Patience not being one of my many virtues, it's driving me a little bonkers!

Coronado is quickly filling up with tourists for the long weekend. Gonna have to hit the beach early for my walks. Fortunately I have the weekend off from the infusion center!

One day at a time, eh?

2011-05-26T19:56:00.000-07:00

Not much to report here..gradually getting a little perkier. STILL have this gnarly cough, as does Kirk now; just hoping like heck I don't get the virus all over again. Apparently with my poor abused immune system, that could happen. Aaaaccckkk!

My appetite has suddenly improved, which is nice! Still on the neutropenic diet, and going bonkers for some fresh raw fruit and veggies. And then there are my drifting teeth on the side that had the tumor…poor things aren't sure where the heck they're supposed to be these days, and boy is it a CREEPY feeling when I inadvertently bite own on something on that side!

I have my first doctor checkup tomorrow since coming home. I'll be wearing my track shoes so I can bolt just in case they get a wild hair and want to incarcerate me again...

Just checking in.

2011-05-23T17:45:00.001-07:00

Plugging away here. White count was back down today, so it's three days of neupogen shots and a second flavor of antibiotics just for good measure.

On top of that, it was May gray and drizzly all day…icckk. Although it did make for an empty beach to walk on this afternoon. Wimpy tourists.

Platelets...and Chihuahuas...

2011-05-21T18:14:00.001-07:00

Back for labs today and a unit of platelets. Still shlepping around with the cold and coughing my dang head off. Arrgggghhh.

We stopped at the grocery store on the way home; of course I stayed in the car. I'm sitting there enjoying the gorgeous spring breeze, and a car pulls in next to me. Mind you, the damn lot was about half empty. Anyway, the lady sits there doing something with the motor running for five minutes, and finally gets out of the car. I know she knows I'm there because she about needed a shoe horn to get out, she was parked so close. She closes the door carefully, and says to something inside the car, "now you be quiet!" As she walks away, a chihuahua pops up and starts going all hound-of-the-Baskervilles on me. And for the next fifteen minutes, I get my right eardrum hammered by the ferocious verbal assault of a dog with a head the size of a mandarin orange. Oh, I tried ignoring her, I tried telling her to be quiet. I even tried to reason with her ("you know, even in my significantly weakened condition, I could still kick your ass.")

Finally Kirk came out of the store and saved me. I swear my ear rang for twenty minutes afterward. Don't get me wrong -- I love dogs!

Time for a movie...

Back to the Land of the Living…Again…

2011-05-19T17:52:00.000-07:00

First full day post-escape. Of course the first event was an early morning (grrrrr) trip back to the hospital to check my counts. Everything looks good -- white count is soaring after my last neupogen injection, platelets are low but hanging in there.

Went for a walk…it felt fabulous, although everything's weak and creaky and sorta loose jointed from two weeks in captivity. I'm definitely weak, and everything exhausts me in about five minutes. (Which of course I found out by trying to do stuff every time I had a flicker of renewed strength.) Lots of flopping on the couch today like one of those fainting goats, lying perfectly still staring into space.

Then there's the G**D*** M***** F****** head cold (technically, RSV -- the most common culprit of colds.) Okay, I am totally grateful that ALL I got was a stupid head cold, when all sorts of really nasty things lurk waiting to attack when you have no immune system. But the mouth breathing is making me criminally insane. I asked the doctor what I could take for it…and was told…are you ready for this??… "well, we don't want to overmedicate you." Which is really HOWLING funny when you review everything that's been pumped through my body in the last six months. I'm allowed Claritan and Benadryl, both of which apparently flee in terror when they encounter the snot factory that is my nose.

Okay, fainting goat moment...

Day +14

2011-05-18T11:20:00.000-07:00

A unit of platelets and a shot of neupogen for the road and I'm outta here this afternoon!

Day +13

2011-05-17T18:23:00.000-07:00

So after all the cultures and tests, turns out I have a cold. I was really fortunate that it hit me after my counts had already begun to rebound. Also fortunate that this was an autologous transplant, and not allogeneic -- it would have been very serious so soon after an allo transplant.

Anywho, I feel great today, hopping around the ward in my isolation garb and chomping at the bit to get outta here. If everything continues to look good, I'll be escaping tomorrow. YIPPPPPEEEEE!!!

Day +12

2011-05-16T12:50:00.000-07:00

Well, the fever was back last night, and briefly topped 101.2, so I was treated to the "febrile patient" protocol. Blood cultures from three different places first: a sample from each port of my catheter, and then an IV in my arm. Then a chest x-ray…at midnight. Started on prophylactic antibiotics (a second variety), and vital signs every hour.

I mentioned to the doctor today that it felt suspiciously like a run-of-the-mill head cold. And so I was treated to a barrage of culture swaps up the nose, amongst pretty much every other sample imaginable.

Results from all the tests will take at least 24 hours. BUT…my counts are good (WBC 5.6 this morning) so if the fever stays at bay and everything else looks good, they might still spring me outta this place tomorrow.

Starting to look like an irradiated opossum again...

Now to make up some sleep.

Day +11

2011-05-15T08:44:00.000-07:00

Today's update: WBC at 1.4. Yippeee! I did have a low grade fever last night, but it's back to 98.5 this morning. I could be out of here in a couple more days if all continues to go well!

My hair has decided to eject again. *Sigh*.

I had an interesting dream last night. I was with a couple of people (I know not who they were), and we were evidently trespassing at some sort of rec center. We were doing our best not to be discovered, but every time we were discovered, I went all Kung Fu Panda on them. I mean, I was kicking ASS, flinging bodies around. I thought that was a fairly unusual dream -- I don't know about you, but those types of dreams usually just involve a lot of fleeing in terror. But no....I was just fricking dominating!

Day +9

2011-05-13T11:39:00.001-07:00

Hmmmm....yesterday's post has mysteriously disappeared.

My hair is still holding fast. It could still decide to abandon ship over the next week. But for now, I'm looking suspiciously like a Chia Pet. It's growing in faster on the very top of my head, so I'm sporting a sort of military fade effect. Hopefully it's gonna hang on and keep growing!

WBC is up from 0.1 to 0.2 this morning. We're on our way…yippee!

Day +8

2011-05-12T09:42:00.000-07:00

...and waiting some more. WBC still at 0.1, but I started neupogen yesterday, so that should begin to come around pretty quickly.

The mucositis sore throat is really annoying. I'll try to swallow in my sleep and just about leap off the bed. It's not exactly conducive to eating or swallowing pills, either. They started me on an IV pain med this morning, because the one they had me on was doing nothing. Hopefully this one will make a real difference!

Been practicing meditating and guided imagery every night with my sister Patricia. I'm starting to get pretty good at it...finding it much easier to push aside all of my thoughts and worries and just focus on healing.

Time to do some laps!

Day +6

2011-05-10T19:15:00.000-07:00

Holding up pretty good here at the Ritz Carlton. We've managed to get the nausea corralled, YAY. My WBC is down to 0.1, so now I'm just waiting for it to climb back up. I'll start getting neupogen shots again tomorrow.

My throat is pretty raw from mucositis caused by the melphalan, but so far no sores in my mouth. Once my white count starts to climb, the mucositis will heal.

My hair is still growing...I'm starting to look a little like Justin Timberlake. We'll see if it's all on the pillow in the morning...

I discovered today that the cafeteria actually makes a decent cheese quesadilla and chicken noodle soup. I'll be living on those for a while!

Day +4

2011-05-08T20:04:00.000-07:00

Not much to report here; just hanging around waiting for my cells to do their thing.

I think we're getting a little bit of a handle on the nausea, which is a relief. You never really notice just how much eating and talking about eating goes on around you until you're nauseous for days on end. Every TV show, every commercial, and pretty much every conversation that comes up somehow pertains to food. Torture!

Still doing my laps, although I've found it difficult to pinpoint a time of day when traffic allows me to get up to cruising speed with Pole Newman in tow. Can't wait to get back to my beach walks.

Inspecting my pillow every morning waiting for my new hair to abandon ship. Can't imagine it's going to stick around after the melphalan, although it'd sure be nice if it did! Time will tell.

Day +2

2011-05-06T20:48:00.000-07:00

Well, time's not exactly flying by here, but at LEAST I have a hot shower. True, the entire bathroom is about the size of that Barbie lunchbox you carried in first grade. And actually taking the hot shower while sporting the catheter and accommodating Pole Newman in the bathroom requires a type of agility most often associated with lemurs. But hey….it's HOT!

Still spending a good deal of my day contemplating whether my antiemetic meds are actually working. (We've nicknamed my room "the vomitoreum".) It could be worse, though, so I'm not gonna bitch too much about that either. Unfortunately the food is just about as good as the stuff at Scripps. Been relying on cheerios, canned peaches and ginger ale for the most part.

Been doing my usual walking (26 laps is a mile), and met with a PT today to help put together some more exercises I can do while I'm here. They're all pretty wussy little moves, but they give me something to do during the inevitably very long day.

That's the scoop for now…doc says 10 to 14 days before my stem cells mature and my counts are good again. Countin' the days!

Waiting, waiting, waiting...

2011-05-05T10:10:00.000-07:00

At about noon yesterday my stem cells were infused back into my body. The process didn't take very long, once the little guys had their warm bath to defrost them. The taste of the DMSO used to preserve them was disgusting, but went away as soon as the infusion was done.

So now we wait. My white count is steadily dropping, and it will probably be about 2 weeks before it finishes hitting bottom and comes back up again. In the meantime, I'll try to keep myself entertained and not think about how nauseous I am...blecchhh....

Big dose of melphalan today.

2011-05-02T20:04:00.000-07:00

They give you ice chips to suck on while you receive the chemo to reduce the possibility of mouth sores. I was instructed to start the ice chips 15 minutes before, and continue for 15 minutes after.

You know me -- I can't do anything without taking it to the extreme -- so I spent an entire hour with my mouth literally packed with ice chips. I swallowed a few now and then for good measure. I swear I was peeing ice water. And I sounded sorta like a mule deer when I tried to talk.

All packed and ready to be admitted tomorrow afternoon. Wednesday is my new birthday!

Maybe it's Maybelline...

2011-04-30T17:01:00.001-07:00

Looked in the mirror this morning and thought for an instant that I had neglected to remove my eyeliner last night. I blinked a couple of times, and realized my eyelashes are reemerging. They're a whopping millimeter long, but you'd be surprised what a huge difference that makes, even when your eyebrows are still MIA. I'm enjoying them immensely, and shall continue to do so, right up until the melphalan kicks in and they all eject again. Sigh...

Zzzzzz....

2011-04-29T20:00:00.000-07:00

You know you've become a veteran of nuclear medicine when you fall asleep and start drooling during your PET scan. Especially if you've always had a tendency towards claustrophobia. Okay, so I did get up at the butt crack of dawn to make it to my appointment on time, but still. Hopefully the sound of the machine drowned out any snoring that took place.

And kudos to the staff in the new radiation/oncology building at UCSD...they gave me TWO hospital gowns to wear, one open in front, one open in back, for full coverage! Genius!! And no, I'm not being facetious....it really was a great idea. Not that I'm particularly self-conscious these days, because pretty much everybody has seen pretty much everything. But, hey, it's the little things.

I also had another EKG and echocardiogram...all of which is just preliminary work before the transplant.

Everybody in the frigging hospital was horking up a lung today. There must be a head cold going around, and the place was packed. I swear I held my breath all day (even with a mask on) and washed my hands like fifty gazillion times. Eeeeeek.

So now to spend the weekend savoring my freedom before they incarcerate me next week. Well, that and getting some extra sleep -- you know how they like to wake you up every three hours in there!

The Herd at Play

2011-04-27T20:11:00.000-07:00

Michelle, David and Holly managed to get some video over the weekend.

The Big Boys, Leroy and Dune, looking mighty spectacular:

(Okay, so Dune's not the brightest crayon in the box, but he sure is gorgeous!)

And Lady showing off her moves:

Harvesting Day

2011-04-25T18:49:00.000-07:00

Today was stem cell harvesting day. My sister Patricia and I dragged our butts out of bed at oh-dark-thirty this morning to be at the infusion center by 7:00. First they did some blood work to assess whether my bone marrow had responded well enough to the high-dose neupogen I've been receiving for four days. By 8:30, we were ready to go.

My new catheter has two lumens...perfect for this process. From one line, the blood is extracted, and sodium citrate is added to prevent clotting before it goes into the apheresis machine. Then my blood -- all of it, a little at a time -- goes through a centrifuge to separate the stem cells from the red cells, plasma, and white cells. The other line brings my blood -- now relieved of its neupogen-induced burden of stem cells -- back into my body. Calcium is added along the way (the sodium citrate bonds with the existing calcium, which would leave me deficient). The blood travels back to my body through a special line that warms it on its way.

(The somber expression below is merely indicative of my utter disdain for early appointments...well, that and the fact that I allowed my picture to be taken sans makeup.)

It was a very strange experience, watching all of my blood leave my body, travel through the machine, and back. Painless, and uneventful -- even boring -- but very, very strange!

The good news is my bone marrow kicked butt, and they were able to harvest enough cells for two transplants today. Not only does that free up my week (yippee!), but the high concentration of cells in a single harvest means fewer bags needed to transplant an adequate number of cells...which means that my transplant will involve a minimal amount of the DMSO used to preserve the cells.

Extreme Body Piercing!

2011-04-22T18:13:00.001-07:00

I gotta tell you, I was bummed when I had to remove my belly ring back in December. But now I have a new piercing…and this one is a doozy!

If you're not eating dinner, or prone to fainting, here's a video of the process…geez, no wonder my frigging shoulder hurts:

http://www.youtube.com/watch?v=FXJvvSbgVTE

(I find it alarming that this step-by-step how to, which really ought to be entitled "Apheresis Catheter Installation for Dummies," is available for viewing by the general public. I mean, really -- who are they teaching?)

It actually feels a lot better today. Yesterday, I swear I felt like I'd wandered into the sights of somebody's crossbow and taken an arrow to the chest. Below is a picture of my latest war wound; the two lumens hang down about 3 inches. I think I'll add some cool beads and start a new trend….

6:20 a.m....

2011-04-21T06:19:00.000-07:00

....off to have my apheresis catheter installed in my chest...eeeeek...

T Minus Fifteen Days....

2011-04-18T20:27:00.001-07:00

This week we start preparing for the autologous transplant. I spent most of the weekend contemplating this next step; while it's not as dramatic and scary as the donor transplant, it's still a big event.

On Thursday I go in to have a central catheter placed. Then I'll receive neupogen shots for four days -- but a much larger dose than before -- to ramp up my stem cell production. On Monday, they start collecting, which could take one day, or several. The following Monday, May 2, I receive a big dose of melphalen, the chemo drug which will pretty much wipe out my bone marrow, and then I'll be admitted on Tuesday the 3rd. On Wednesday the 4th, my stem cells will be "transplanted".

After that, it's just a matter of waiting for my counts to come back up again. Providing there are no complications, and I'm able to eat and drink on my own (melphalen can cause severe mucositis), they'll send me home shortly after my white cell count begins to rebound.

And then, the instant Dr. Curtin gives me the okay, I am going up to see my herd!!!!

New Herd Pics...

2011-04-17T19:22:00.000-07:00

Spring has sprung...

Playing in the beautiful sand arena...

Old man Johnny soaking up the sunshine...

It occurred to me today....

2011-04-15T20:18:00.000-07:00

...that it's really not feasible to live every day as if it is your last day on the planet.

Why, you ask? (Go ahead. Ask. You know you want to know.)

Wellll, for starters, I probably would have bolted instead of waiting an hour and a half to talk to the doctor today. Hey, no disrespect, but if you're living on borrowed time, an hour and half is just too long to wait.

Then I would've given the lady in line at the pharmacy a black eye when she impatiently asked "Are you in line?" and made a flicking gesture with her hand indicating I should decrease the six foot gap I'd left between myself and the guy hacking up a lung in front of me.

At that point, with the cops already after me for assault, I would have been sorely tempted to knock off a couple of banks on my way home. Heck, I'm dressed for it -- scarf, big sunglasses and a mask. I'm gonna need the cash to hire the private jet to take me up to see the horses, and of course the helicopter to take me from the airstrip to Oasis Ranch.

Along the way I'd have to find the best sushi restaurant I could and stuff myself with raw fish. But in spite of the aforementioned scofflaw tendencies, I wouldn't dine and dash...and I'd leave a big tip for the sushi chef. Hey, I just robbed a couple of banks, remember?

Today was my last official visit at Scripps. I'm going to miss everybody...they took great care of me and became true friends. On Monday I meet with Dr. Curtin at UCSD, and we start gearing up for the first transplant.

Beach Fluffer Guy.

2011-04-13T19:13:00.000-07:00

So how is it possible that the guy with the big tractor (henceforth referred to as "beach-fluffer-guy") fluffs and smoothes the entire beach every morning, and yet by the time I go out for a walk between 8 - 9:30, it's impossible to not tread on someone else's footprints?

Seriously. I don't walk down by the water where most people stay, either. And we're talking about a mile of beach. That's a LOT of footprints.

Incidentally, when I was running every day, beach-fluffer-guy used to really piss me off. When the tide is high, he fluffs all the way down to the surf, and you sink up to your ankles with every step. Try running four miles with a couple pounds of sand in each Nike.

Okay, truth be told, beach-fluffer-guy still pisses me off. He fluffed the damn beach one morning after a hard rain which had already (beautifully) obliterated any human footprints. Plus he's a tad maniacal...you almost expect him to start gleefully mowing down tourists.

And just the idea that the beach is so excessively trod upon daily that beach fluffing is NECESSARY so that everyone can better enjoy their beach experience is a little nuts, isn't it?

I'm keeping busy: working on websites, doing lots of walking and trying hard not to think too much about the upcoming autologous transplant. I really believe that someday the idea of chemotherapy will be considered barbaric...

Quick update...

2011-04-12T21:50:00.001-07:00

Just a quick check-in tonight. Platelet counts were much better today. Don't have to go back for anything 'til Friday. It's been a busy couple of days, so I'm toddling off to bed....more tomorrow!

A bevy of...well, really whacky women!

2011-04-10T19:04:00.000-07:00

Spent the better part of the day with my three sisters...poor Kirk...invaded by a sea of Fink sisters! Then again, I'm sure it was great entertainment. We're not exactly a shy, retiring, homely bunch. As the entire town of Coronado now knows, after we all went for a walk. Err...it was more of a brisk-paced march, actually...turbo-mode runs in the family..down the beach, and then back through town.

Yesterday my folks were here for their usual Saturday visit, bearing sustenance and clean laundry. Kirk and I just finished Mom's cannelloni -- yum!

Now tomorrow I'll have to catch up with my to-do list, which seems to get longer by the minute.

My counts were MUCH better yesterday, so I don't go back for more labs 'til Tuesday, and hopefully I'll have produced plenty of platelets and enough white blood cells to stay in the normal range.

Well, that'll take your mind off your white cell count...

2011-04-08T20:59:00.000-07:00

The poison done kicked my bone marrow's ass this time around. Not surprising, since the protocol they have me on is very aggressive. My white cell count was down to 0.1 (normal range is 3.8 - 8) and my platelet count dropped to 3 yesterday (normal range is 150 - 450 - yikes!) I've been getting platelet transfusions (as well as an occasional blood transfusion) every day, which means lots of hours at the hospital hooked up to ol' Pole Newman. White cells were back up to 0.8 this morning, and platelets at 10...still crazy low but at least an improvement.

If you're not familiar with platelets, they are responsible for clotting. Which makes it kinda dicey walking around with a severe shortage. Hey, it took my mind off of my low white cell count. Hard to worry about attack-of-the-germs when you're busy worrying about spontaneously exsanguinating if you sneeze too hard. Eeeeek....

Spring has sprung up at Oasis Ranch. I'll post new pics of the herd when I have a minute...right now I'm calling it a night!

Clean Freak Much?

2011-04-05T18:12:00.000-07:00

My sister had a great idea today: I need a little holster for my Clorox Wipes so I can wear them everywhere I go. Just kidding, although the idea really appeals to me, and there is a distinct possibility I may have to rig one up. I can see it now: me with a container full of Clorox Wipes hanging off of one hip, and a water gun loaded with diluted bleach holstered on the other. I'll have to figure out where to carry the dispenser for the disposable gloves. And maybe I'll put a water cannon on the front porch filled with diluted bleach to disinfect visitors before they make it up the stairs. Might even disinfect a passing tourist or two.

Other products that I would probably stoop to using in my germaphobic state right now:

- Paper towels -- for the bath! Wasteful and completely ungreen? Sure. But when you're using a new one every day, just think of the laundry you'll avoid doing. Heck, you could use a new one every time, even if you showered six times a day! (I haven't gone quite that bonkers...um...yet.)

- An at-home sanitizing foot bath. OH! I just Googled this and found one the perfect size! Check it out:

http://www.americanfloormats.com/sanitizing-footbath-floor-mat/

- Disposable clothes. Go ahead, change eight times a day without creating a ridiculous amount of laundry which your apartment complex washing machine will leave dubiously clean.

- Disposable toothbrushes. I'd be treating the regular variety as disposable already, except the damn things cost $5 a piece.

Hey, technically speaking, I'm not a true mysophobe. That would be someone with an IRRATIONAL fear of germs...

Some of my favorite sites...

2011-04-04T17:56:00.000-07:00

...to waste time on while getting blood transfusions (or just passing the time in general):

MentalFloss.com...amuse and astound your friends (and even your frenemies) with completely useless trivia you learn here:

http://mentalfloss.com/

Fugly Horse of the Day: most of you horsepeople are aware of this one...a no-holds-barred blog about horse abuse, bad breeding, and stuff like that:

http://fuglyblog.com/

And of course, the Bronx Zoo Cobra's Twitter feed:

http://twitter.com/bronxzooscobra

Unfortunately, I neglected to bring my MacBook to the hospital today, so I had to watch quality programming on daytime TV and stare longingly out the window at the gorgeous day instead of perusing these endlessly entertaining websites. (I think they need to build an outdoor courtyard especially for blood transfusions and the like...)

HEY, who stole the sunshine?

2011-04-02T19:38:00.000-07:00

Seriously, it was perfect for two days, and then this?

I didn't get my walk in 'til almost 2:00 this afternoon. It was downright cold and windy on the beach, and all the brides and bridesmaids (seriously - on any weekend day in spring, summer and fall there will be no less than eight weddings to walk by) had to be freezing in their sleeveless/strapless dresses. I marched in front of one just as they got to the "in sickness and in health" part. (I would have gone around behind, but I think the Hotel Del would have gotten a little cranky if I trampled their carefully cultivated shore grasses.) Hey, I had one of my pretty scarves on, and sunglasses, but it was still lousy timing for the bride and groom.

Oh shit...did I mention yet that my sister Robin is an HLA match? I don't think I did. (Chemo brain. It's an adventure.) Found out Thursday. (Was it Thursday? Like I said...an adventure.) It will be months before we get to that point, but I am VERY lucky to have a sibling match. Well, heck, for that matter I am just darn lucky I had three sisters who were willing to be tested as donors! Thank you, ladies, for taking a needle on my behalf, and for all being willing to share some stem cells with me. You all rock. From what they tell me, unrelated matches are much harder to recover from.

Doggone sun better make an appearance tomorrow, or I'm making some phone calls.

Home again.

2011-03-31T18:19:00.000-07:00

You do know why being home means so much to me now right? It's not just being home (although that's part of it)...it's the fact that I can *almost* forget I have acute leukemia and multiple myeloma when I'm here. That is, of course, when I'm not taking all my meds, looking at my shiny head in the mirror, contemplating the usefulness of applying mascara to my three remaining eyelashes, avoiding raw veggies like a diehard fast-food junkie, wearing a mask in public, having Kirk wrap my PICC line so I can take a (thank God, hot) shower, taking my temperature, getting a twitch whenever I hear someone cough, or being totally paranoid about microscopic things my nuked immune system can't fight.

But HEY. Those things only take up, oh, I dunno...about 22 hours a day? Plenty of time left to march around and be oblivious!

Anyway it was a gorgeous day, 80 degrees at the beach, and I was free and able to enjoy it. Which is all good.

In three weeks they're going to start harvesting my own stem cells for the autologous transplant. About a week after they finish harvesting, they'll give me a (gnarly) dose of melphalan to prepare my bone marrow for transplant. I understand melphalan is not one of the kinder, gentler chemo drugs. Eeeeek. Not that the ones I've been getting are exactly mild. But you know how it is -- the devil you know versus the devil you don't know.

Someone said to me the other day, "Just live your life." Which is the best advice anyone can offer, I know. Except for the fact that trimming hooves all morning, skating six miles in the afternoon, and riding my horses 'til the sun goes down are all sort of out of the picture...which makes it literally impossible to live MY life. So I'm kinda living somebody else's as best I can right now. A couple of logos I've been working on to keep me busy:

Is that the theme from Jeopardy! I hear??

2011-03-29T19:37:00.000-07:00

do do, do do, do do do, do do do do DO, do do do do do…BZZZZZZTTT! (cue Alex Tribec: "What is 'let Maria go home now…let Maria go home'.")

Rats. Well, hopefully tomorrow. Just waiting for the methotrexate to vacate my bloodstream, and those results will be here tomorrow. (If they're not, I'll be hard pressed not to stage a prison break…visions of me in my color-coordinated jammies, head scarf and Ugg boots, Pole Newman in tow, thumbing a ride south on 5.)

Dinner was orange. No, seriously…macaroni and cheese, orange yogurt, and one of those little fruit cups (peaches) you put in kids' lunch boxes. At least there was no asparagus mush defiling my plate. It's the little things...

Incidentally, I hear the idea of the neutropenic diet is becoming passe. A quick search of the NLM database returns articles dating back ten years questioning the validity of the idea and citing a lack of scientific data supporting it. One review went as far as to call it "clinical superstition." And the current trend is to do away with the neutropenic diet in a clinical setting.

That figures. Torture me with fake food for 45 days and then revoke the whole idea. Hmmmmfffphhhh.

And MORE poison du jour.

2011-03-28T10:19:00.000-07:00

Made it through the 22 hour methotrexate, and the first 2 of 4 doses of cytarabine. Another dose at 4 pm, and the final dose at 4 tomorrow morning.

I was looking at the label on the IV bag just now. Right under the label that says "CAUTION: CANCER CHEMOTHERAPY" it says "CYTARABINE - PRESERVATIVE FREE."

I dunno…does anybody else see the irony in that, or is it just me?

It must be poison-thirty...

2011-03-26T10:58:00.000-07:00

Well, as is usually the case, this hospital stay is clearly not about rest and relaxation! Unless I dreamed it, the janitor emptied my trash at about 10:20. And I think my nurse was in about a dozen times last night, drawing blood twice, adding potassium to my drip, taking urine samples, etc etc. She started a transfusion at about 6:45, and chemo will start when that finishes.

Determined to avoid the proffered, lovely and fashionable butt-baring hospital gown in favor of my own jammies, I got up and showered (it was predictably lukewarm - I promise you that's not an exaggeration) at 6:00. I had to take care of that before they start the 22 hour chemo drip today; can't Houdini a t-shirt on or off while you're hooked up to an IV.

Seriously…why is it that after all this time, no one has designed anything more comfortable, attractive, and just generally more conducive to a patient's self esteem than the hospital gown? One size fits all -- REALLY??? I've seen 200lb men shuffling down the corridor in the same size gown (er…probably the EXACT same gown) they want me to prance around in. Half of them (the gowns, not the 200lb men) have permanent knots in the back ties so you can't even remotely adjust the fit. If you roll over in your sleep more than once, they wind up in a bunch wound up around your armpits. And then there was the one with the peak-a-boo pocket right over my right boob.

Anywho. I'm sitting here watching appropriately poison yellow poison flow through my IV into my veins. Pretty funny to watch everybody gown up and double glove to handle the stuff, and then they plug it into your arm and open the flood gates. Huh. Something tells me there's got to be a better way to treat cancer...

The Best Laid Schemes...

2011-03-23T19:55:00.000-07:00

So, I spent Monday and Tuesday getting everything ready to go back in to the hospital for a week...laundry and packing to be sure I had a clean pair of pajamas and socks for each day, orchestrating how much food would be in the house for Kirk but not for me, etc.

So there I was, with my suitcase full of precisely eight days worth of jammies, two sets of clean sheets for my bed (I'm not really a diva, I swear...the hospital sheets were too rough for my chemo'd skin), my cozy forest-green sherpa blanket, two books and my MacBook to keep me busy, individually packaged snacks to supplement the neutropenic cafeteria food, a pair of shoes for walking and my Ugg boots to keep my feet warm. And it turns out my white count is slightly too low for them to start chemo, so they neupogen'd me and sent me back home.

I'll get neupogen again tomorrow, and probably be admitted again on Friday.

I had to call Kirk, who had dropped me off and was planning to come back later in the afternoon, and we lugged my significant little portable happy-camp back home again. Aarrrgghh. This is the problem with being a very organized planner sort.

Honestly? I wish they would have just done labs when I was there on Monday. Not sure why they opted not to, but then they would have seen that my counts had dropped.

Oh well. Came home and went for the walk I missed this morning, which was nice because now it's raining again. And I spent the afternoon playing with some ideas for a logo I'm working on, and made some progress.

Think I'll go be one with the couch now. Tomorrow's another day!

Much Ado About...

2011-03-22T15:44:00.001-07:00

Well, not exactly nothing. I mean, there's nothing like the sensation of something tapping into your hip bone...it travels up through your skeleton in the most peculiar way. And the first couple of needles used to numb everything aren't particularly comfortable, but they're not excruciating either.

I'm sure there are people who are better at the procedure than others. The gentleman who performed today's procedure just does bone marrow biopsies...that's his job...so I'm guessing he's pretty darn good at it!

I commented that they probably didn't do biopsies looking for plasma cell leukemia very often. And guess what? He said they'd done two already this week. Huh. For such a rare affliction, that's a whole herd in one week. Makes me wonder if it's on the rise for some reason...

Well, I'm glad that's over with, although I'm sure it won't be the last one. Now back to Scripps tomorrow morning for hyperCVAD round three.

NOT THE CORKSCREW! And a collection of random thoughts.

2011-03-21T19:54:00.000-07:00

Okay, so I'm sure they really just use a (big) needle, but you can't see 'cause you're one your stomach. And the process sure FEELS like somebody's cranking a damn corkscrew into your hip. Barbarians! Can you tell I'm looking forward to my bone marrow biopsy tomorrow?

How long is it really appropriate to use a sponge in the kitchen or bathroom before you bust out a new one? I mean, seriously, ignoring the fact that I'm sort of the boy in the plastic bubble half of the time these days. It's not like they come with instructions. Is there a sponge de rigueur of some sort that I've been oblivious to all these years?

What about a toothbrush? I've always just used 'em 'til the bristles started to wilt over the sides like dying flower petals...and then used 'em some more. Now I boil them weekly if I don't have a new one handy.

And is it really sanitary to share a tube of toothpaste with someone else? For that matter, is the very concept of the tube of toothpaste really sanitary? I mean, part of the paste touches your (presumably unboiled, unless you've lost it like me) toothbrush every time you squeeze some onto it.

Never really thought about it, did you? I'll have you all boiling your toothbrushes in no time...

Very funny.

2011-03-20T08:12:00.000-07:00

Boy, if there's one thing I've learned, it's that having a sense of humor is the one thing that will save your sanity.

It's not always an easy thing to do, and it helps tremendously if you have a little assistance. Kirk and I sat here and howled the other day about the idea of waking up in the morning and blinking into the sink to see perfect outlines of eyes staring back at you...in the form of your own eyelashes. His visual, not mine, but it sure made me laugh, even at the thought of losing all my eyelashes. Which I still have at the moment, although some have definitely jumped ship (I think I'm down to about twelve per eyelid.)

Incidentally, I've finally learned how to pencil in my eyebrows, too. They're still hanging in there, too, but better to learn how to recreate them while they're still there, than guessing after they decide to drop to the floor with an audible tinkle like animated Christmas tree needles.

New subject...I'll be spending the morning waiting for the large-ish spider I just saw scuttling around the edges of the ceiling fixture over the bed to decide to repel down to the comforter. Can't reach him where he is, but I don't particularly feel like being ambushed when I go to bed tonight...

A Perigee Moon

2011-03-18T20:14:00.000-07:00

Some new words for the vocabulary: perigee and apogee. Tomorrow night, the moon will be full while it is at perigee (the closest point of orbit). That means it's 31,000 miles closer to us than it is at apogee (the furthest point of orbit).

And did you know that no one is sure why full moons look larger when they've just cleared the horizon? What's up with that?? AaaaWOOOOOOOOOOOO!!! (That would be howling, in case it doesn't translate in print...)

I know. I'm a total geek. But you have to appreciate the fact that this was actually headline news...and it's not about doom, gloom, death and destruction!

I'm really hoping the beautiful weather holds for the weekend so I can enjoy it as much as possible. Tuesday is a bone marrow biopsy at UCSD, and Wednesday I go back in to Scripps for my third round of hyperCVAD. Looks like a ten-day stay this time, unless I get lucky and they bust me out early like last time. (NOOOOoooooooo...not the cafeteria neutropenic diet again........arrrrrrgghhhhh....) In the meantime I'm a walkin' fool.

This will be my last round of hyperCVAD. Next month they'll harvest my own stem cells for the autologous transplant...

I want...

2011-03-17T19:22:00.001-07:00

I sit here and I look at pictures and watch videos of my horses. And I desperately want to go to them, and throw my arms around their beautiful necks, and bury my nose in their manes, and hug them hard. I want to breathe in their warm, earthy smell. I want to brush them and pet them and marvel at their size and gentleness. I want to gaze into their amazing eyes and get lost in their mysterious, liquid depth. I want to listen to them chew and watch them tear off bites of grass. I want to hear the drumbeat of their collective hooves as the whole herd simultaneously takes off at a gallop, and watch them buck and revel in their own power. I want to take them, one by one, into a roundpen and interact with them.

And then I want to swing up bareback from the ground like I could do (on a good day) not very long ago. And I want to ride.

Quick update tonight...

2011-03-15T20:38:00.000-07:00

Kirk and I met with my transplant coordinator, Peggy, at UCSD today. It was a great meeting...she went over the plan in detail, and while there are still some things up in the air, it feels a little more like we have a timeline and a plan.

It's funny, though, how scheduling that appointment to discuss what's next was such a scary thing. I've established this little routine, and as hamstrung as that routine is, it has become my comfort zone in no time flat. Such a creature of habit...

My hair is making a valiant attempt to make a comeback. I feel bad for it...really, I want to tell it to just save its energy until it's really time! Heck, it only just finally finished falling out the first time. I gotta admit it feels pretty cool though...

No appointments scheduled for tomorrow. I'll be making the most of the free day!

The Laundry Waits for No One!

2011-03-14T20:17:00.001-07:00

Boy, I tell ya. No matter who you are, no matter how big you think your problems are...the laundry still stacks up and the toilet might decide to stop up at any given moment.

Actually, I enjoy doing laundry. Don't get me wrong -- it's not as if I would choose it over other, more interesting activities. But there's such a sense of satisfaction involved with taking a pile of dirty, rumpled stuff and making it fresh, clean and pristinely folded again. (My mother is homozygous for this particular gene...)

Waiting for the plumber at nine o'clock at night, not so satisfying. Especially because, this being a small town, we know the plumber...and I'm pretty sure this was the first time he's seen me sans hair. Although I did have one of my pretty scarves on. And to his credit, he did only a very small double take. Who knows...maybe he just thought I'd gone all gypsies, tramps and thieves...

Tomorrow I go to UCSD to meet with my Transplant Coordinator and have some tests (EKG, chest x-ray, etc) done. Thursday I go back for a pulmonary function test. And alas, Dr. Curtin apparently does want to do another bone marrow biopsy. I'm guessing that will happen this week or next while my counts are up. Yep...gonna uncork me again like a fine bottle of wine...

Time, appreciating what you have, and whatnot.

2011-03-12T19:33:00.000-08:00

You know why we have such a hard time appreciating the good things? Because there's always the possibility nothing untoward or difficult will befall us, and we'll get to live to a ripe old age with no earth shattering experiences and be a cantankerous old fart no matter how ungrateful we were along the way.

Or you could get some rare blood cancer. Or you could be in Japan during a 8.9 earthquake and devastating tsunami. But nobody has the crystal ball, do they? So we might worry about those kinds of things from time to time. But mostly, we race around our daily lives like we're going to live forever.

And the most inane things occupy our concern.

I was pondering today the fact that so far, I'm the same old me. For instance, I still call bad drivers really creative and unilaterally unflattering names. (I'm not sure why, but I sorta expected that behavior to disappear as I became a more enlightened, forgiving person. Nah. Now I just say things like, "I may have cancer, but at least I drive better than you, assmunch!")

Also, sudden changes to any schedule I may have had in mind still make me twitch. Incidentally, I'm boycotting the time change. I can't afford to lose an hour these days. Heck, neither can you.

Oh, I'm getting much better at sweeping the whole scattered mess of me back into the moment, for sure. But my zen moment is still a loooong way off...

Tsunamis and Swirling Fog...

2011-03-11T13:32:00.000-08:00

What a strange day. Tsunamis, swirling fog, and a predictably long day at the hospital.

Spent the better part of the morning in the large room where they tend to send outpatients when the place is full. Not exactly private…sometimes that makes for a little camaraderie. An odd brand of camaraderie, for sure -- we sit and compare notes regarding our senses of smell, reactions to neupogen, hair loss…all sorts of whacky stuff. But then there are the, "gee, I feel so bad for you, you're so young" type of comments that just mess with your ever-so-carefully constructed one-day-at-a-time plan…arrrgghhh… Other times, being in that room you just hear more than you want to hear about what's going on with the other patients. Eeeek. Don't need that kind of food for thought!

Now I'm waiting for a blood transfusion, which will take another two hours. At least I'm not missing a gorgeous day outside. Plus, what with the tsunami advisory here in San Diego, a beach walk might've been a bad idea this morning (okay, so it didn't really turn out to be very hazardous here, but hey, it made me feel a little better about missing my walk.)

The wireless reception is a little better on this side of the hospital, so maybe I can get some actual work done here. It's certainly a more interesting view; the golf course/ocean view is pretty, but the parking lot offers a lot more activity.

So the hospital vs. home attire thing is firmly engaged. My mom bought me four beautiful headscarves that arrived yesterday. They're just so pretty and feminine, I can't wait to show them off…but I refused to wear one to the hospital this morning….crazy!!!!

And I reserve the right to have some really weird quirks right now...

2011-03-09T19:58:00.000-08:00

Like the "hospital clothes" versus "home clothes"...I refuse to wear the same outfit all day at home that I wore for my hospital visit. In fact I now have specific "hospital visit" outfits. So weird.

My former number one phobia -- driving over ramps and bridges, and especially our very own Coronado Bridge -- has disappeared. Also very weird.

Oh, I'm quite sure I'm going to be a leeetle bit on the eccentric side, at least for a while, after this whole experience. (And just hush up, all of you out there saying to yourselves "GOING to be a little eccentric?? Like she wasn't already??" I CAN HEAR YOU!!!) I mean, everybody has their little quirks...but I think I'm gonna be a contender...

I've started brushing up on the latest standards for web design coding this week. I've been using old code and workarounds for TOO LONG. Lots to learn after a several years' long hiatus from that career, so that oughta keep me busy for as long as I want it to. Of course, Google's new algorithms are going to work hard to chump any effort to stay in the search engine ranking no matter HOW compliant your code is, but hey, that's a whole 'nother ballgame, and I'll march over that bridge when I get there.

Not sure what or when my next chemo treatment is. I'll see the doc on Friday and try to get that blank filled in. Then lots of labwork to do at UCSD coming up. I'll be happy to get that ball rolling. Okay, all except for another bone marrow biopsy, that is. Nothing like having somebody drill into your hip like they're trying to cork a bottle of wine!

Oh yeah, me on speed...that's a SUPER idea!

2011-03-08T08:21:00.000-08:00

Ladies and gentlemen, welcome to the Decadron Motor Speedway! Yep, not only does it double my appetite and smush down some of the chemo effects, it's like a triple-espresso. Wheeeeeeeeeee!

The trick is to take it early in the day, though, which I couldn't yesterday because I didn't have the prescription 'til 2:00. Woke up at four this morning, and I swear my eyeballs were so wide open it hurt. But I had some great ideas between 4 and 7, when I finally gave up (and realized it was going to be a sunny day!)

It dawned on me that the Decadron crash when the four day cycle is over is probably at least partially to blame for my gloom and doom days. I expected to crash physically, and just not feel as good...I didn't think about the emotional impact, but the timing sure fits. Hopefully acknowledging that will help buffer it if indeed that is the case, and it happens this time around.

In the meantime, I'm determined to take advantage of the appetite and see if I can gain some dang weight. I'm still at least 20 pounds lighter than I prefer to be. I've managed to gain a little, but if I could pack on a good ten pounds right now I'd be happy! I'd prefer to do that without totally going the Big Mac route but I think I'm going to have to break down and buy some ice cream and frozen fruit for hi-cal milk shakes...hey, you gotta do what you gotta do.

inthemomentinthemomentinthemomentinthemomentinthemoment...

2011-03-07T10:21:00.000-08:00

At the hospital for my blood work and doc visit right now. Hopefully I won't need any transfusions or anything and this will be a quick check, because I think tomorrow is a chemo day. (It must be...I feel way too good to not be due for a nuking.) And hopefully that will be outpatient.

See how hard it is to not worry about what comes next? Yeesh.

I have to give myself a lot of credit, though. I did manage to have a very "in the moment" weekend...not just by keeping myself ridiculously busy, but by consciously not allowing myself to get all wound up and start perseverating. Which is a spectacular accomplishment, because if there is one thing that I am freakishly good at, it's worrying about anything and everything. Seriously...is there a job out there that would make good use of that skill? Because otherwise it is a fairly useless, and definitely unhealthy talent. I dunno...maybe I could start a business hiring myself out to worry about other people's stuff, so they don't have to? Think about it...I could free up so much quality time for so many people! But then, of course, if they are anything like me, they would just worry that I wasn't worrying effectively enough about their stuff.

Better yet...maybe I'll start a worry website. For $5 a month, you store your worries in the database, and the server worries about them for you. You can log in and visit them anytime you want, but log in too many times in one day, and there's a charge for perseverating. Hey, don't laugh; I could be the next Mark Suckerburg (and yes, the typo is intentional...what a weenie that guy is.)

Oh drat...looks like I get nuked today instead of tomorrow. Oh well, that makes tomorrow a little easier. The upside is I get four days of Decadron, too, which will hopefully turn me into an eating machine...

Day by day by day...

2011-03-05T20:10:00.000-08:00

I want to say THANK YOU to all of you for being here for me. Every comment, every email, every text/phone call/visit is a welcome moment out of my head and an instant boost. If I neglect to answer emails directly, please know that I'm not unappreciative...it takes me a couple of days to keep up on email sometimes (I'm a couple days behind at the moment, but I figured I'd better blog!)

I hadn't really thought about how social my job was....but I spent pretty much all day, every day talking to my clients, who became very good friends over time. The rare days when I was out trimming horses alone always went by slowly without good friends to gab with. That goes double now, because truth be told, I had a lot of one-sided conversations with those horses. (I'm sure folks walking by pondered my sanity, but it's better than talking to yourself, which is what I'm on the verge of some days now!)

It was a spectacular day here today. I confess, I would have been bitching and moaning if I'd had to trim hooves, 'cause it was warm, and I would've been sweating bullets out in east county. But I thoroughly enjoyed it today. Took a long walk through the lovely streets of Coronado with my sister this morning (the beach was predictably a mob scene). Visited with two good friends/clients this afternoon. Did a little shipping and a little marketing and a little web design in there to keep the ball rolling. And another walk with Kirk before the sun went down.

It's supposed to rain on Monday. Hmmmmppphhhffff.

Hollywood Really Chaps My Hide.

2011-03-04T20:40:00.000-08:00

I've always been fairly thin; it's just me. (Incidentally, I used to be 5'9", but recent measuring at the hospital says I am a full inch shorter than that. Hmmm. Is it the myeloma, or the lack of hair??) Anyway, having lost most of my considerable muscle mass (seriously, thin but buff), I am now a positively waif-like 110 pounds.

So what does Hollywood do? They effing go all CURVY on me. No shit. I swear to God, did you see the Oscars? We're not talking about svelte and gym-toned, either. No, we ditched emaciated, blew right past low-but-acceptable BMI, do not pass Go!, do not collect $200, and went straight for Va-Va-Voom. Those babes had MEAT on their bones.

Remember when everybody's collarbones were sticking out like the wishbone on the carcass of the spent Thanksgiving turkey?? I look virtually robust next to the leading ladies from three years ago.

When did this happen?? It's as if overnight, the Tinseltown moratorium on body fat was lifted, and every leading lady started wolfing down actual food like there was no tomorrow.

Okay, I'll be honest, it's refreshing to see. But the timing just effing SUCKS. Curvy bitches.

Outside.

2011-03-04T15:26:00.000-08:00

Outside everything's better. Inside it's too easy to dwell, to imagine, to wonder, to yearn for the past or fear for the future. To stagnate and gather dust and breed mental germs that grow quickly insurmountable.

Outside is now. It's in the moment. The wind is blowing, the clouds are drifting, the birds are singing, the ocean rushes and recedes. There's enough going on that has nothing to do with me, has nothing to do with people in general, with our daily concerns and the outsized events that bring them into razor clarity for their very pettiness.

I should have been a horse...a wild one, or one living at Oasis Ranch. Or maybe I was one...maybe that explains a lot, actually...the pointy ears, among other things...

If I could stay outside 24/7, I think I would right now.

Instead I'm sitting here staring at my mousepad and contemplating just how filthy it probably is. Okay, now I'm totally paranoid. Maybe I better go back outside...

That's it. I'm finding a rock to hide under.

2011-03-03T18:05:00.000-08:00

Hey, at least the cankles are gone!

It was actually a pretty nice day...long walk on the beach this morning, and it warmed up nicely. I also found a few things here I can work on -- just tidying up a few old websites (thank you, Kirk, for thinking of them!)

I started reading Lance Armstrong's book tonight. I'm all of five pages in and he's already succinctly summed up some of my own initial feelings about my diagnosis. Should be a good read...I'll have to pace myself so I don't read it too fast.

So then, after I really had a pretty nice upbeat day, I go and read the article on CNN talking about the high rate of multiple myeloma in people exposed to the aftermath of 9/11. It told the story of one fireman in particular, who was diagnosed at age 52, and battled it for three years before he finally underwent an allo transplant. They lost him soon after to a viral infection (nice). They also talked about how the transplant was done essentially to give him a few extra years...they didn't expect it to cure him. (Did I forget to ask that question?)

QUIT SHOOTING ME DOWN, GODDAMNIT, I'M TRYING TO STAY REMOTELY POSITIVE HERE!

Geez. Talk about too much information. And I didn't even Google that one!

Tunnel Vision.

2011-03-02T18:16:00.001-08:00

The ONE thing I would very much like to do right now is NOT think about my illness. And yet EVERYTHING seems to revolve around it. I don't think anyone could ever imagine how immersed you become in the reality of it...because you have no choice. There are pills to take, appointments to keep, phone calls to make; simply keeping treatment on track is a job unto itself. And then there's just the stuff like having to wrap your arm to keep your PICC line dry so you can take a shower; keeping the right kind of food in the house when your counts are low; being diligent about mouth care to prevent mouth sores.

ARRRGGHH.

And I thought i was fried when I was trimming hooves all day...what I wouldn't give to go back to wrestling horses. I sincerely and vehemently apologize if I ever bitched about my work. I was a fool.

Here's an interesting development. I'm getting really weird about "hospital things" versus "home things." If it's something I wear in the hospital, I don't want to wear it at home. I'm going to have to replace half my wardrobe when I get out the other side of this.

Didn't get a beach walk in today, but I did do about a half dozen loads of laundry, which entailed about two dozen trips up and down the stairs. Not as enjoyable as the beach, but it's still gotta count for exercise. Now it's time to put my (slightly less puffy than last night) feet up and rest.

The docs are giving me a little reprieve -- no visit tomorrow, blood work on Friday, and hopefully no visits over the weekend with my next dose of (this round of) chemo not 'til Tuesday.

Cankles and Clusterfucks.

2011-03-01T19:48:00.001-08:00

I have cankles. And I'm not happy about it. It wasn't a banner day…cankles and clusterfucks.

BUT.

I'm at home, which rocks. And I didn't have the dexamethasone flop I expected today. It was a beautiful day and I logged a good long walk on the beach this morning (much to the chagrin of my cankles, which are the result of some 12 pounds of water weight I'm lugging around right now.)

Anyway. Just a quick one tonight, 'cause I'm about worn out. But I'm here, fighting the good fight…cankles and all.

And more of the happy herd...

2011-02-27T19:03:00.000-08:00

Clearly enjoying the sun on a gorgeous morning. And the mini-donks are now one with the herd!

And some new Herd pics...

2011-02-26T18:17:00.000-08:00

Still muddy up there, but looks like it was a gorgeous day today. The herd is definitely looking good!

Ah, the things you learn. And Chemo Brain...

2011-02-26T16:55:00.001-08:00

You know what they say…bad experiences stick more clearly in your mind than good ones. I guess that's a critical element for survival: if you're out wandering around the Serengeti, and you narrowly escape being eaten by a pride of lions, it's best to remember how horrifying the experience was. That way you'll be twice as careful next time (or better yet, curb your wandering of the veldt altogether).

I guess that works in good and bad ways with an experience like this. I think I definitely learned a much better strategy for surviving a hospital stay. In addition to my laps around the ward with Pole, I have some weightless strength training and toning exercises I'll do every day that I can. I'm availing myself of the treadmill and the stationary bicycle. I have my new MacBook with a big, beautiful screen to accommodate my post-45 eyes, and I have access to my home machine remotely, and I'm writing like crazy. I even have a better strategy (I hope) for keeping good snacks available from the cafeteria.

Of course, I am in the giddy throws of my second day on Decadron, which helps a lot. Talk to me again on day 5 when I don't get the steroid. Much less giddy, I assure you.

And then there's the downside of remembering the bad stuff much more vividly…arrrggghhh. Call me a wimp, but I never realized how very much I HATE not feeling good. If I can just buck the gnarly headaches this go-round, it will be much easier. But it's still no picnic and the yucky days sure as shoot stick out in your mind.

But enough whining.

While I was on the treadmill today, I met a 23 year old man who is 11 days post non-related donor transplant and doing fantastic. He was diagnosed with one of the rarer types of non-Hodgkins lymphoma. None of his siblings were a match, but lo and behold, 4 months after the search began, they found him a match. He said he cried when he got the phone call. Well, heck, do I feel like a wimp -- I've already cried plenty!

He was working on one of those 1000 piece jigsaw puzzles, and we chatted about the importance of keeping yourself BUSY both physically and mentally. Not only to while away the time, but to try to counter the effects of "chemo brain." Yep, it's true, chemo at least temporarily hampers your memory and your overall clarity. There was actually an article on just that topic in the New York Times last week.

Funniest thing about that conversation was one of the first things he said was, "you look pretty young too." (I'm thinking masks might be the next fashion trend…) And I, in typical fashion, added a goddamn year to my age and replied, "I'm 47." Dumbass…I just turned 46 a couple of weeks ago…what's up with that!

Chalk it up to chemo brain...

Okay, let's get this show on the road.

2011-02-25T11:37:00.001-08:00

Back at Scripps this morning. It wasn't easy dragging my ass back in here…a little like trying to gently place a cat in a tub full of water…but I did it. I packed absolutely everything I could think of to keep me busy and comfortable…I had visions of a delivery truck backing up to the front desk ***beep***beep***beep*** and unloading a collection of steamer trunks. Okay, it wasn't quite that extreme, but I do have practically my entire casual wardrobe and my back pack is STUFFED with my electronics, books, sketch pads, etc, etc.

Talked to the docs this morning and it sounds like I won't be locked up as long this time, providing all goes well. They say that since the disease (I refuse to call it "my" disease) responded so well to the first round of chemo, this one shouldn't be as hard on me.

I also discovered a treadmill I can (and am allowed) to walk on, which will while away some time and be easier than navigating laps around the ward with Pole Newman in tow.

After our visit with Dr. Curtin yesterday, who had an interesting way of describing what happens in these type of blood cancers, Kirk had a pretty funny analogy last night. He said my immune system was like a bunch of conscious objectors -- picture the troops hiding behind sand dunes, smoking dope, while the enemy rapes and pillages. Friggin' slackers. And so now we're forced to call in Special Forces in the form of a donor's diligent immune system…

So here I'll be for at least a week and a half. Y'all know where to find me!

So here's the deal.

2011-02-24T16:39:00.000-08:00

We (me, Kirk, my sister Lori, and my mom and dad - it was a sold out show) met with Dr. Curtin at UCSD today. So here's the lowdown.

Before doing the allogeneic (donor) bone marrow transplant, we'll do an autologous stem cell transplant. That means they'll harvest my own stem cells, wipe out my immune system with high dose chemo, and then "rescue" me with my stem cells.

Hey, you know I couldn't just get a plain old bone marrow transplant and be done with it. Where's the suspense in that???

The idea is for the disease to be deeply in remission before doing the allogeneic transplant. Once I recover from that (hopefully a matter of weeks), they'll proceed with the donor bone marrow transplant.

In the meantime, I'll probably have two more cycles of the HyperCVAD chemotherapy. Plus a bunch more tests to assess...well...pretty much everything.

The next step is getting my sisters tested to see if anybody is a suitable match. If not, we go to the National Database.

Consult at UCSD today.

2011-02-24T08:52:00.000-08:00

Will post here later with what we learn....

Lukewarm Showers and Asparagus Mush.

2011-02-22T19:42:00.000-08:00

Okay, I love all my folks at Scripps Green. But then there are the frigging lukewarm showers and nasty neutropenic food. I think I'm dreading that more than the chemo.

Seriously. Very early on I learned to take my showers first thing in the morning because there was actually SOME warm water. And I dunno...maybe it was just the shower in that room. But good grief, people, is it too much to ask for a bonafide HOT SHOWER? The kind where when you stick your hand in to test the temperature, you don't have to really THINK HARD about whether the water is warm enough? The kind where you actually feel warmer when you're done, and the mirror fogs up a little? I swear to God I won't sue you a la the McDonald's hot coffee lawsuit. See?? You even have it in writing!

And I hate to harp on the food again, because really, the regular menu is pretty darn good. But the neutropenic food…well, I understand the concept just fine, but I gotta believe that the actual product could be made infinitely more appetizing. After all, we are talking about a bunch of people who aren't exactly grizzly-out-of-hibernation, car-upholstery-eating ravenous to begin with. (And please trust me when I say that there is no planet upon which canned, and THEN overcooked asparagus mush is considered edible.) The truth is, I've actually spent several hours today plotting a better strategy than last time for surviving the offerings of the Scripps neutropenic diet. (It's going to be a little like McGyver, but I do have a few ideas…)

I just had to get that off my chest. I'm done whining now, I promise.

Mom and Dad brought homemade stuffed peppers and salad for lunch today (okay, now you know why the food is such an issue -- I'm spoiled). DAMN it was good. So nice to have them here, too…I wish we all lived a little closer.

Counting down to 2:00p.m. Thursday.

Round 2, DING!

2011-02-21T15:19:00.000-08:00

My blood work looked good again today. I figured it would - I've been feeling great! But it looks like I better make the most of my freedom. Depending upon what I learn at my consult on Thursday, the docs are talking about bringing me back in for HyperCVAD round 2 either Friday or Monday.

This is how it will go until I have a donor match and the bone marrow transplant is scheduled. The chemo regimen keeps the disease under control. Which is why I am REALLY eager to start the process of finding a match.

And just when my sense of taste and smell were finally almost normal...*sigh*...

It's another gorgeous day (but still way too cold for San Diego in late February), so I'm a walking fool...

Victim vs. Adversary

2011-02-20T13:01:00.000-08:00

Two weeks out of the hospital, I am feeling much stronger, both physically and mentally. The thought that in spite of how miserable chemo is, you feel like yourself again (mostly) eventually, definitely makes it easier to envision going through more courses while we find a bone marrow donor. At least the process is not a mystery now; I know what to expect, I know how the other drugs affect my body, and I have an idea how long it takes to rally afterwards.

I also have a better strategy for staying sane while I'm inpatient, and plenty of goals while I'm here at home (which would include learning to relax and sit quietly reading or what have you without jumping up every five minutes to do something).

Now that I'm feeling better, I've added a little toning workout to my walking - mostly lower body exercises due to my ribs and my PICC line. I lost so much muscle at the outset of this (I'm the buttless wonder...not that I ever had much of a butt, but...), it's time to start rebuilding some of it as I gain some weight back.

I don't think I ever realized just how competitive I am by nature. I've never been into organized competition as such. But being presented with adversity...and an obvious opponent...has brought it out in spades. I guess people are either inclined to take a victim's role, or an adversarial role. I'm honestly a little surprised to find I'm the adversarial type. Even after several rough days, I bounced back to "EFF this thing!!" before I knew it.

Everyone tells you it's normal to be mad, but you have to get over it. I think that needs to be put into context. You can't wander around and be mad at everything. Oh, I'm mad all right. But it's all channeled right at the enemy in great, venomous, HOW DARE YOU waves of fight.

Off to the beach for a walk...

Enjoying the rain for a change...

2011-02-19T08:59:00.000-08:00

After a couple of years of waiting for the Tijuana River Valley, where our horses were boarded, to flood every time we had a decent amount of rain, I had gotten to a point where I dreaded weather. We experienced two floods there; one fairly severe, in which we were wading waist deep in filthy, freezing flood water leading horses up the hill to safety. The experience didn't inspire giddy anticipation when the forecast called for an inch or more of rain.

Now, with the Herd happily roaming the rolling hills in Patterson, a forecast of heavy rain is no longer a stressful event. I sat looking out the window yesterday, watching the wind whip the trees, listening to the rain patter on the roof, and thoroughly enjoyed it. (Side note: while the majority of trees simply bend obligingly in the wind, the palm trees seem slightly hysterical about it, flailing their arms in all directions like some overwrought drama queen.)

Slept better last night; I'd been waking up at 3 and staring at the ceiling 'til morning, which is a REALLY undesirable thing when you're working hard to keep your brain screwed on straight. But I didn't take any naps yesterday. Voila - a good night's sleep!

I see a glimmer of blue sky peeking through out there, so I'm going to bundle up and sneak a walk in before it decides to rain again...

Chant with me now...

2011-02-17T17:14:00.001-08:00

The weather was spectacular today, if a little chilly. Everything is so vivid after the rain! Big surf to watch (I bet that water's frigging FREEZING right now).

So much to think about and so much I am better off NOT thinking about. I have to focus on using this time to get as strong as I can before the next step. A constant litany in my head of "FIGHT, FIGHT, FIGHT, FIGHT!!" In the middle of the night I wake up mentally chanting it over and over without even thinking about it.

My appetite has returned full force...I swear I eat all day every day. Little bits, but still. Which would be ever so much more enjoyable if everything tasted the way it was supposed to. Not that it's stopping me...my jeans fit WAY better today.

I need to get back to writing my book. I haven't touched it for two weeks...it's been too hard to think about my boys. But I'm better after the pictures Holly and Dave sent yesterday. With a rainy weekend ahead, that's my plan.

Helluva a thing, this is, but if there's an upside right now, it's spending time with Kirk. We were both so busy before this upended us we didn't get much quality time. We are making the most of it.

I made the mistake of Googling plasma cell leukemia the other day. Funny thing is, ordinarily, that is the FIRST thing I would have done. But I hadn't until now. I guess I had my head in the sand. In retrospect, that was smart. For God's sake, don't let me Google it again. Those aren't MY odds. They're somebody else's. F*** this M****** F*****.

The Very Happy (and definitely Slightly Feral) Herd

2011-02-16T18:41:00.001-08:00

Damn, are they cute, or what?

Duney:

Leroy:

Riser:

Mixer:

and the old man, Johnny:

10,000 Views!

2011-02-16T08:10:00.000-08:00

Hey, people actually read this thing!

Drugs suck. And what the BLEEP is up with the heightened sense of smell?

2011-02-16T08:08:00.001-08:00

So, here I am wandering around in this sort of fog like my damn head is wrapped in cotton, feeling a little less like myself every day, thinking geez, at some point the effects of the chemo have got to wear off. And then it dawns on me. Pain medication. Last time I took heavy-duty pain meds for any period of time was after I had my wisdom teeth extracted about a dozen years ago. I only took them for about a day and a half, but I remember I felt like crap - horrible headache, fuzzy brained, couldn't keep my eyes open, and depressed all to hell. Stopped taking the damn things and felt great.

Yesterday I thought I'd forego the tramadol and see what happened.

Sure enough, after about 12 hours, things started to unfog. The headache is gone, but I also stopped taking the neupogen and the zofran, so it's not clear which was the culprit there.

The more I move around, the better my back/ribs feel, and Tylenol helped plenty yesterday when I did start to feel achy. So for now, the heavy duty stuff will be reserved only for days when I really can't handle it. I would much rather be sharp and in a little pain than a freaking walking zombie.

Which leads me to this question...why on EARTH do people get addicted to pain medication? I mean, aside from needing it for horrendous pain? There is just nothing alluring about feeling like your brains have been replaced with cotton candy...

And about my sense of smell...it's not the icky things that I can smell better...it's the things that used to smell good, like soap and laundry detergent. It's like I can smell the chemicals in everything. I might be employable as some sort of detergent sniffing dog. I'm going to buy scent-free laundry detergent today. but how much you wanna bet I can still smell it?

Plugging Away....

2011-02-15T18:08:00.001-08:00

Me and Mojo are in a bit of a funk this week. Up and down, up and down...it's easy to stay positive on the days I feel really good and can stay busy, not so easy when I have a marathon headache or my stomach isn't cooperating.

I'd be a big, fat, hairy liar (and clearly, hairy is something I am not right now) if I said this wasn't the hardest thing I've ever had to deal with. It's probably all the harder because I am such an active, outdoor person...if I sat at a desk all day and had no desire to exercise, it might not be so tough. But for someone who spent all day, everyday, outside doing a very physically demanding job, inline skating in my spare time, and riding my own horses daily...well, I'm kinda like a racehorse confined to a 24 x 24 pen for months with an injury.

Staying busy is a conundrum unto itself...it would be a lot easier if I could be physically active, but aside from walking, I'm kinda limited. Reading books is great, but I fall asleep fast -- and a lot -- when I read. I've worked on my websites, and spent a couple of days getting my Thrush Ninja! business organized so it will be easy to manage. Cleaning and laundry are good -- gets me moving and needs to be done anyway. Computer games don't help with the headaches, but eat up some time otherwise. I've never been a sudoku fan...maybe I should get some crossword puzzles. I need to start drawing more but haven't been particularly motivated (mostly because I try not to think about my horses too much 'cuz I miss 'em so...) Used to be there just wasn't enough time in the day. Now, it's exactly the opposite. Aaarrrgghh!

Good news from the docs alway helps. Today I got an A+ on my blood work...everything is better than expected. And my consult at UCSD has been moved up to Feb 24 instead of March 1. I'm anxious for the consult; it will give me a better idea of what the next couple of months hold. More good news -- if I need another 'round of chemo, I won't need any more lumbar punctures. THAT'S a happy thought!

Today WAS a good walking day. I was determined to make the most of that in case it decides to rain tomorrow. And Rosvita, you've inspired me to get a little map of the island and plan a different route every day.

After this, everything really will be cake...

Belated Birthday Visit

2011-02-13T18:08:00.000-08:00

Mom and Dad came down from Hemet today to celebrate my birthday with me. They had planned to come down on my actual birthday last Wednesday, but we ran into a string of extenuating circumstances. First, Mom came down with a cold. We rescheduled for Saturday, and then realized that Coronado was going to be a mob scene with the "100 Years of Aviation" celebration going on at the base. They finally made it here today!

Here is the beautiful birthday cake they brought me:

Mom threatened to ignite the poor cake with 46 candles but I begged her to spare the cake and my smoke alarm and possibly my apartment (but she was just joking).

Not much else to report today....I think it's time for a nap!

Walking. A lot.

2011-02-12T17:25:00.000-08:00

It feels like summer today. February's a little early for that, but I'm not gonna complain, because I was outside enjoying it and it was marvelous!

After my little vampire fix yesterday, I was much stronger today. I went for a couple of nice long walks. I focused on deep breathing to improve my lung function, which took a bit of a hit after a month in the hospital.

I finally figured out that most of the fatigue is pharmaceutically induced. The instant I lie down or lean back and rest my head, my eyes close and I start drooling (I know -- charming!). As long as I sit up and move around I'm fine!

I've suddenly realized just how much I was managing to fit into my days pre-diagnosis. Now the challenge is to learn to adjust to a slightly less supersonic pace.

I knew I was in pretty good condition going in to this, but I think even I underestimated how fit I really was. I've lost a lot of muscle, but I'm bouncing back strength-wise faster than I expected. (My case manager at Aetna was concerned about the fact that we have to climb a flight of stairs to get to our front door...hardly an issue!)

This is all excellent, of course, except that now I want to go do everything, and keeping myself entertained in a sedentary fashion just isn't gonna cut it. It's a good thing the horses are eight hours away, or I'd be sneaking rides for sure about now.

I'd love to start doing some (very) light strength training, but I have to be careful with my PICC line (no lifting/straining on that side). And picking up a jog is out for now.

Waaaaah!

So, I'll stick with plenty of walking. Which probably means a LOT of walking. That's okay...Coronado is perfect for that!

Drive-By Neupogen Shots...

2011-02-11T17:43:00.000-08:00

Still making daily visits to 3 North for my neupogen shots. (Neupogen boosts white cell production and helps raise neutrophill counts after chemotherapy.) The staff mirthfully calls these visits "drive-bys", which I thought was pretty darn funny!

Today was a little more than a drive-by...I spent the better part of the day getting platelets and a unit of blood. And slept through most of it. They call it "hospital fatigue"... I swear, the minute my butt touched that dang hospital bed, I was nodding off. So it was sort of a lost day, but I did escape in time to enjoy the fact that it was a SPECTACULAR day. Spring has evidently sprung already.

Almost a month in the hospital has totally ruined me for daytime television. It's not just the bad programming though; it's more the inertia: the sitting-there-staring-doing-absolutely-nothing-productive. I used to really look forward to "movie days" when Kirk and I would just take an afternoon off and watch a couple of good movies. Right now that sounds colossally depressing!

So as I dozed through my transfusions, I noticed that today's hospital bracelet reflected my age after Wednesday's birthday. Now, truthfully, age has never really bothered me...I've always felt somehow better with age; or maybe not better, but "empowered" might be a good word. But...is it just me? or does 46 sound INFINITELY older than 45??? EEEEEK.

I Swear It's Not Contagious.

2011-02-10T14:34:00.001-08:00

On our way home from the hospital after I was released on Sunday, we stopped by the pharmacy for some of my prescriptions. This was my public debut as a bald person outside of the hospital, and I wore my mask to go into the store.

Okay, granted, it's not every day you see a 5'9" 110 lb bald, masked girl climbing out of a Toyota truck in downtown Coronado. But I thought it was interesting how many people - adults - stopped and stared. I mean STARED - wide eyed and looking relatively horrified - and even when I looked right back at them, they kept staring.

It's not that I really cared. (In fact my new favorite thing to do is to stare right back at them and smile...although the smile is lost on them if I'm masked...which kinda makes it even funnier.) It's more that I wondered what the heck they were thinking. I mean, given my appearance, the odds that I was the victim of anything BUT cancer were pretty slim, so it's not like they were standing there going "oh my lord, what on earth happened to her???"

Maybe part of it is that I really don't feel compelled to cover up my bare head unless I'm protecting it from the sun, or it's cold. I can honestly say I never noticed what most women do under these circumstances...it's possible most people don a hat or wig or scarf. Then again, maybe it's just the pointy ears...

Then there's the tendency people have of giving me an exceptional amount of personal space. This is something I really appreciate, because it keeps their germs further away from me. Yet I suspect that's not exactly what's motivating them...

My consult with UCSD is now scheduled for March 1st. Can't wait to get the ball rolling on that! If you're curious about what a bone marrow transplant involves, here's some great, detailed info from UCSD's website.

Muddy Buddies...

2011-02-09T19:50:00.000-08:00

Just a quick pic of Johnny and Mixer...still best buds...and clearly enjoying the mud!

Birthday Burgers!

2011-02-09T19:02:00.000-08:00

happy birthday TO ME,
happy birthday TO ME,
happy birthday dear MEEEE,
happy birthday TO ME!

Got up this morning and had a beautiful (chilly!) walk on the beach. Made oatmeal with Craisins and brown sugar. After that I just generally took it easy. Yesterday's lumbar puncture knocked me down a little bit, so I was a napper today, but the headache's a little better now.

More than anything, I think I needed to catch up on some calories from last week. Just ate most of a burger from the Brigantine, and a big cup of fresh fruit...that oughta make a dent in the deficit!

I put on a pair of jeans today...you know, the pair that I could never wear before because they were WAAAY too tight? I was lookin' all hip hop in them today, 'cuz they were falling off and hanging down around my hip bones. All I needed was a wallet chain and some tighty whiteys. Guess I better eat more burgers...

I swear the trees and foliage around here have grown considerably in my absence. And it feels like SPRING -- which is especially weird because I essentially missed winter. That's okay...spring is good.

Time for a walk around the block, and then a little mindless TV...

Still at large.....

2011-02-08T16:36:00.000-08:00

Reporting in after my fourth and final intrathecal injection. Once again, not such a big scary deal...the toughest part is holding perfectly still for the duration of the procedure. (Actually, I only realized how cavalier I've been about this process after Dr. Andrey let me catch a glimpse of the needle used for the procedure....holy crap....the thing's eight inches long and more of a tube than a needle...)

Afterward I spent the requisite hours lying flat on my back to prevent a post-lumbar puncture headache, although this idea has been debunked by several studies. Nobody was offering any better ideas, so what the heck right? I can lie flat on my back for a couple of hours. (In retrospect, that was harder than I thought it would be, 'cause I'm feeling pretty frisky today. Must be all that walking out in the fresh air!)

My biggest concern today was that they would find some reason to snatch me back into the hospital. Woulda been like trying to put a cat in a pool.....MEOW PPPHHHFFFFFFTTTT!!! Luckily everything looked good - Doc once again said I am doing very well with the treatment. I should have 14 - 21 days now to recover from the first round of chemo. Yipppeeee!

So here I am at my desk (damn paparazzi), happily surrounded by our saddles and a painting done by a friend of a friend about a decade ago. That's me (with lots of hair!) with my now 28 year old gelding Johnny No Spots.

You can see that I am now not quite as bald as a cue ball, because the clippers they had at the hospital weren't up to snuff. I'm a little tufty, actually...Kirk swears I have a "soul patch" right below the point on the back of my head. And then there's this sort of friar's fringe of baby-fine hair around the edges that doesn't want to give up and kinda sticks out this way and that and waves fairy-like in the breeze...

There's No Place Like Home....

2011-02-07T14:52:00.000-08:00

Home is the best place on earth. No detail is lost on me right now...our super comfy couch...our super comfy California King with SOFT SHEETS...natural light...a bathroom you can turn around in...all my stuff (including my Mac with a screen you can actually see without a high-powered lens)...any food I want any time of the day or night...and my best friend/love of my life. Heck, it even just smells better here -- the smell of Purell hand sanitizer is quickly becoming my least favorite fragrance, and the hospital reeks of it!

Plus, it feels really good to be productive. Try as one might, there are limits to how much one can achieve with a dinky notebook computer and no access to the files on your main machine. (Taking care of that before they lock me up again!)

We have our ducks in a row now to start shipping Thrush Ninja! again. For the time being, we'll only be offering the one gallon Daily Frog Spray to keep things simpler for my minions here. Apologies to anyone who ordered this past month and received nothing but a refund. Thrush Ninja! was a one-woman show and I was completely unprepared for my entire staff to be hospitalized for a month!

Tomorrow I have my fourth intrathecal treatment...keep your fingers crossed they don't decide they need to lock me back up for any reason.

Dorothy was right...there really is no place like home.

Rally cap!

2011-02-05T14:05:00.000-08:00

Feeling much more myself today...which is apparently to say much more manic and optimistic! Of course, an hour of the most maniacally upbeat (and/or aggressive) tunes off my iPod didn't hurt!

I am unpoled today (another step in the direction of freedom) and HUGELY enjoying walking in a circle without hanging myself.

Yippeeeee!

Endurance

2011-02-05T10:01:00.000-08:00

Well, we’re just gonna forget about yesterday, because yesterday was a yucky day.

Today, so far so good…

I am definitely at the limits of my tolerance for captivity. Really hoping to get to go home for at least a few days. Doc says all my levels look good, so if I do okay today (stay hydrated and no nausea) I might get busted out of here tomorrow. Anything that needs to be done right now can be done outpatient, so CROSS YOUR FINGERS ‘cuz I’m going bonkers in here.

Seems like I’m always waiting…waiting for my meds, waiting for my nurse to bring ice, waiting for a blanket, waiting for the doc to make rounds. Everybody is wonderful, but there’s always something pending. It does start to test your patience. I keep telling myself I have nothing else to do, but I do sorta of try to have a plan for the next event (email! Ellen! Walk time!) and it chafes a bit.

I never considered myself a patient person. I guess I was right about that.

I guess the moral of that story is NEVER take your freedom and absolute autonomy for granted. And for heaven’s sake, don’t ever get yourself convicted of a crime, ‘cause prison’s gotta be way worse than this!

MIlestone!

2011-02-03T15:25:00.000-08:00

Milestone today: finished the last dose of IV cytarabine this morning. I have one more intrathecal injection (lumbar puncture) next Tuesday, and I will have completed my first full cycle of chemo. Then we wait to see how the beast has responded. After that -- either another 'round, or we start talking about my transplant.

I'll tell you...after more than 20 days captive, I can't begin to imagine how hard it must be to be a horse on long-term stall rest. At least I understand why I'm here...it doesn't make it much easier. I get to wander outside a little bit each day, and there are definitely moments when I am in danger of bolting for the hills! I'm so used to being outside all day every day, I can't even imagine how people work indoors all day every day. AAAACKKK!!

Just a quick report today!

"Charlie don't surf."

2011-02-01T10:11:00.000-08:00

So, along with each new barrage of chemo, I'm humming "Ride of the Valkyries" like a complete looney tunes, and envisioning a fleet of badass helicopters bearing down with deadly fire power on the beast. C'mon, kids, hum it with me now! (If I lost you on that one, it's an Apocalypse Now reference, as is today's blog title.)

Looks like I'll be humming a lot today: I have my third LP intrathecal injection this afternoon (one more next week), as soon as the 24 hour methotrexate drip is done. The cytarabin will follow. It's sorta like mixed martial arts oncology...no holds barred!

I awoke this morning from a dream about trout fishing. Now here's the thing...I really like to trout fish, and most especially with my friend Michelle. But in the dream, I was fishing with my Dad. And I don't think I've ever fished with Dad...at any rate, trout fishing got MoJo all choked up (go figure) as if trout fishing is something that I might really miss if I could never do it again. I dunno...I suspect it was my sneaky subconscious trying to get me to seize up and start perseverating about things that, frankly, don't matter right now. Energy best spent focused on fighting, fighting fighting!

I will mention here that I MISS MY HORSES SOMETHING FIERCE....now shut up, MoJo, you pussy.

Poison du Jour!

2011-01-31T11:19:00.000-08:00

First of all...what a spectacular day. My kind of weather -- cool, crisp, and some clouds punctuating the blue. Wandered around out front for half an hour this morning soaking it in. It's the kind of weather that makes horses snorty and playful and proud...the kind of day when they try on all their cool moves out in the pasture.

Now down to business: everything looks on target, so today is methotrexate day. Hey, I haven't tried that flavor of chemo yet! Jenn just hooked me up - it's about a quarter 'til 3 -- and it'll be going for the next 24 hours. TAKE THAT, BEASTIE!!!

I'm hoping to have a consult regarding the bone marrow transplant with UCSD set up soon...

Time to pull out the sketch pad and draw some frisky horses.

100% AERODYNAMIC!!!!

2011-01-30T13:35:00.000-08:00

If I wasn’t so busy, I oughta try out for the swim team, or maybe have a go at cycling…I’d freaking slice through water like a damn dolphin about now. The odd hanger-on eyelash/brow would only slow me down marginally (and could leap off at any given moment now, anyway…all it might take is just a little bit of wind resistance.)

Like the pin-up girl pose? Maybe we should do a calendar: The Hairless Hotties of 3 North.

(See, I told you I have pointy ears.)

As reported earlier, my counts are cooperating nicely. As of today, I’m back to a normal white cell count, and feeling great. Which means that first thing tomorrow, I will be getting the next doses of chemo - methotrexate, and then cytarabine this time. And then a week from Tuesday, my third lumbar puncture. We’re keeping this Mf’er on the RUN.

I’ve learned a lot about being a good patient. It doesn’t just mean taking your meds and being passive. It means asking questions and keeping track of things. It means doing your part -- no one can force you to drink enough fluids, even with an IV, and no one can make you get up and walk and move as much as you possibly can. It means TRYING. Learning what works to manage your pain and side effects and helping the staff help you. More than anything, it means focusing your mind on fighting…staying positive, refusing to dwell on the small stuff, and really keeping your mind on the big picture.

And remember to take the time to watch a good horse movie with your excellent boyfriend once a week…it’s been proven very therapeutic indeed!

Is it my imagination, or do I look a little like Fievel the Mouse?

2011-01-28T18:12:00.000-08:00

Now it's abundantly clear to me why my ear pinning is so effective with my horses.

I have pointy ears. And they kinda angle out to the side like an affable horse unless I frown, and then they are FOR SURE alpha mare pinned ears.

And here I thought I had some kind of mysterious talent. Nope. Pointy ears.

I do, however, have a very shapely round head that lends itself nicely to the half dozen soft cozy beanies that have been waiting for their day to come. Sure makes it easy to regulate your body temperature: hot? Remove beanie. Cold? Don beanie. Voila!

Possum Head, and the Church Mouse Nurse

2011-01-28T10:41:00.000-08:00

Well, sheeeit howdy, kids, I am here to tell you that by the end of the day yesterday, me and Mojo were not our kinder, gentler selves.

It started at oh-dark-thirty yesterday morning, with a pulse bounding into the 150s (yikes!), followed shortly by EKGs, tranfusions, and lots of naps. Seems like I ate breakfast but I can’t really recall. Finally, lunchtime rolls around. So there I am, peaked and snarly, and what does the cafeteria do? THEY WHEEL IN A CHICKEN BREAST THE CONSISTENCY OF PETRIFIED WOOD, accompanied thoughtfully by mushed canned asparagus and the worst excuse for teriyaki sauce EVER. *Sigh*. Somewhat exhausted, I did my level best to eat it, although it was NOT what I had ordered. Yay me. Wrestled some of it down and went back to sleep while Mojo worked on fashioning a Mohawk out of my quickly disappearing hair.

I rallied a bit after the transfusion and the nap, and was up wandering the halls in marginally better form right before dinner. Which of course means I was working up an appetite, and by the time the dinner cart made an appearance, I was pretty excited about it. I actually lifted the lid from my plate with anticipation…only to find THE WRONG ORDER AGAIN. (By the way, what’s up with the congealed brown sauce that passes for everything from gravy to teriyaki? It’s the exact same stuff, I promise you. I’ll not be fooled.)

I gotta tell ya, I was a little loopy from meds, but at this point I was starting to entertain conspiracy theories. I sent it back and waited TWO HOURS for a plate of plain pasta. I think the nurses were a little afraid for the kitchen staff at this point…and rightly so. (This is about the fifth time they have brought me exactly what I DIDN’T order.) Of course, by the time the overdue pasta arrived, I was so freaking tired I couldn’t even look at it. I did manage to drink a chocolate Ensure and a half a piece of white bread with peanut butter to fill the void.

I was lights out by 8:00...just DONE! My nurse last night, Eleanor, was like a little church mouse…even when she had to come in and draw extra blood and give me an IV I swear I barely knew she was there. She kept my meds on perfect schedule and I slept clear from 8:00p.m. to 6:00a.m.

I am a much perkier patient today! I am, however, definitely sporting a hairstyle reminiscent of an irradiated opossum. The nurses are going to shear that for me today. Be interesting to see how lumpy my actual skull is under there!

Fuzzy Pillowcases.

2011-01-27T10:30:00.000-08:00

Woke up to a very fuzzy pillow case this morning. Head not-so-fuzzy. My very brave hair has finally called it a good day to bid adieu with my scalp. It’s a lot like shedding out your horse’s winter coat…the more you manage to shed off, the more there is ready to follow it. I expect by the end of the day tomorrow there won’t be a whole lot left. I could use a shedding blade and a pair of clippers about now, and just get ’er done so I can start wearing my cute beanies!

Heart rate is a-rocketing today, so it looks like I get another transfusion. My EKG today looks identical to the original, though, so no problems…just need more blood. Other blood stats look good; white blood cell count is *slightly* higher than yesterday, so that’s progress.

The staff have started to call me the horse whisperer. I’m not sure how that got started, but I like it!

My new friend here, Sam, who is one of my CNAs at night, needs help naming a new puppy! It’s a 6 week old male French BullMastiff with blue eyes. Any suggestions????

Mom & Dad Celebrate 59 Years Today!

2011-01-26T18:17:00.000-08:00

Lots of family here today…they about wore me out (in a good way), so this will be a brief blog tonight!

While there will likely be at least one more round of chemo, it‘s time to start talking about consults for my bone marrow transplant, I did file an appeal to stay at Scripps Green for the transplant, but if time is of the essence, I won’t delay to wait for a change of venue, so Dr. Andrey’s office is arranging a consult with UCSD.

I’d like to ask my clients to please be patient when ordering the So Cal Mineral Blend. We have plenty in stock, or can drop ship from the manufacturer if you give us a 2 week lead time. But Kirk is a one-man-show right now, and it’s going to be difficult for him to do daily deliveries and coordinate all of my business while he keeps his business, and our daily lives, running. We’d be happy to leave your product on the front porch at our apartment and would appreciate it if you are able to pick up! PayPal preferred, personal checks fine too.

On the same note, we will not be able to produce or ship Thrush Ninja until further notice. As soon as I am released from the hospital, I hope to get some folks trained to handle that for me, but for right now, it’s simply too much for us to handle.

Golf Tournament starts tomorrow, with a bird’s eye view of the 9th hole from my window. That should be entertaining!