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Wednesday, May 4, 2011

The Good, the Bad and the Roadtrip

The Glory Days
They let me out a week ago (Saturday) an hour after the last bag of chemo squeezed out its final drop.
The first thing we did was sit in a patch of fading sun in the front yard. I squinted into the slanty light and felt reborn. Just to be outside, feeling the breeze on my bald nubbin-head, watching the tree branches waving slowly at me—it was miraculous.

We tried to make the most of my good spirits and relatively good health by piling into the car for a "quick" drive to Yosemite the day after my release (see photo). I desired to see some mountains and meadows, and wanted to try to tap into some nature. Mostly we just gazed out the windows and admired. At one point we stopped by a stream in the middle of the Valley. I crouched down beside the water and looked at the sparkling light and felt utterly dazzled. I also felt a very deep longing to just climb aboard a floaty raft and drift into the middle of that twinkly river and float around forever. I realized that's one of my favorite things to do in life: drift around on floaty rafts on warm summer days. When this is over, I have a lot of floating to do.

But what about that Cancer Situation?
When I left the hospital, things were very much up in the air. It seemed to my doctor that the initial dose of chemo I received on April 1 hadn't been strong enough, and that the final week before I was hospitalized, everything came rushing back. Mega-spleen blew up again, my platelet levels went down, and essentially the cancer proved itself to be far more aggressive than everyone had anticipated.
While I was in the hospital, my doc in Visalia began consulting with another doctor at Stanford's Cancer Center, who advised him to treat me with the much-more-intensive 96-hour chemotherapy regimen that I received. It was also established that after my release, I'd drive up to Stanford to have a consultation with this Other Doctor, to discuss the rest of my treatment and the potentiality of a stem cell transplant.
Essentially, by the time I was out it seemed clear to everybody that this wasn't going to be quite as easy as we all thought in the beginning. I wouldn't just be stopping by the cancer center every third tuesday to chill in a recliner, have Anna With the Magic Hands pet my arm and get a six-hour-chemo drip while my cancer faded away. But - what would it be? It seemed we'd have to wait to get to Stanford to find out.

Stanford Calls
My appointment at Stanford was originally scheduled for May 13. On Tuesday, the Stanford People called to see if we could come earlier instead and see the doctor Friday, May 6. Under normal circumstances, this would be great news. Hey, come up early! Get that consultation done and get on with things! Woohoo!
But I don't live under normal circumstances. I have cancer and I live with two hypervigilant obsessive medical parents of which I am the only offspring. The news that our visit to Stanford was bumped up a week brought about a heavy flow of what I can only describe as panic.
The appointment was now mere days away. Would we be able to find a place to stay in time? Where would it be? How would we find our way there? How would we find our way from the hotel to the doctor's office? Would my doctor here be able to transfer my medical records in time? Would there be time to order and perform that full-body PET scan they recommended we bring? All these questions caused my parents no end of extreme fretting, visible stress and highly vocalized worry.
To me and Annie, it seemed like the whole thing could be easily handled with a car, a backpack and 10 minutes on Google. But we are not in charge, my friends, we are not in charge.

Even once the travel arrangements were taken care of, one large obstacle remained. I still needed to get a PET scan. (During a PET scan, your body is injected with Radioactive Sugar. You are then laid on a slab and rolled back and forth through yet another futuristic donut, while the cancers in your body pick up the sugar and glow under the light, or some such thing.)
It always starts badly when you can't eat or drink for 12 hours. Another bad sign was that the PET scan occurs in a trailer. Yes, like a mobile home. (Apparently the equipment is so expensive that most hospitals can't afford to own it themselves. So the machine lives in a trailer and travels between different hospitals and clinics so the benefits can be shared far and wide. Whee.) The third bad factor is that I couldn't get one scheduled until Thursday, the day we were meant to leave for Stanford. So the whole thing had to squeak by in the morning and then get processed quickly enough that we could pick up the results CD on the way out of town.

PET Scan Hell
The whole thing was a nightmare. I spent 30 minutes sitting on the curb outside the truck—empty of all food, beverages, medication or painkillers—before my mom knocked on the window and we were told we had to register inside the building first. As we registered, it came out that they weren't intending to do a full-body scan as ordered. My dad had to be called to remedy this, which set into motion a whole other crazy sequence of events I'll describe next.
At that point I was so frustrated and uncomfortable I was crying and begging to just blow off the test. My mom told me no.
The tech eventually arrived and brought me into the trailer, where it was freezing and they were blasting smooth jazz. I cannot bear smooth jazz. Literally that music makes me angry in a place that no music should be able to touch. And yet it blasted while I seethed. They sat me in a recliner, put the radioactive sugar in my veins and told me I had to wait an hour for it to circulate before they ccould do the test. What did I hate even more than the smooth jazz they were torturing me with? The miserable woman that was in charge of me. She had allergies, she told me, so bad she had to take 3 different kinds of allergy medicine that morning! I'm lucky she doesn't trip all over herself and fall down right in this little trailer! She keeps saying stuff like that, and stumbling all over herself in her ugly orthopedic sneakers, and I marveled that she's allowed to keep her job.
Many, many smooth jazz hits later the hour ended and they got me on the slab. They rolled me up in blankets and strapped my legs down. Then, instead of whizzing me back and forth and out like the CT scan, I was left there to scoot, inch by inch, for forty minutes more.

Dr. Dad Freaks Out
By the time I staggered out of the PET scan, I was worn down and battle-weary. I wanted nothing more than to go home, gobble handfuls of medicine, get put in the car and roll on toward Stanford.
But Annie and Barb were waiting for me outside, and the expressions on their faces were anything but roadtrip-carefree.
What, I wondered, could possibly have happened in the 2+hours I was trapped inside that torture truck?

What had happened is that Dr. Dad had in fact been admitted to the Emergency Room. When we called to tell him they weren't planning to do a full body PET, his anger/blood pressure/panic levels started to rise. He arrived at his office just at that moment, whereupon his nurse pointed out that he had mysteriously developed a black eye. He thought he was having an a stroke—which is how his dad died—which made him start to panic even more. He got dizzy and laid down on the floor of his office. His nurse put him in a wheelchair and pushed him to the emergency room. They immediately started running CT scans on him. His life flashed before his eyes. (Or, more accurately, my life flashed before his eyes, because he says the whole time this was happening to him all he could think about was how he had to get me to Stanford in time for the consultation.) His tests came back normal. He had had a full-blown anxiety attack. He came home, took one of my Ativan, and collapsed on the couch. Barb ended up driving us to Stanford.

Stanford Says
The Stanford Doctors were very thorough, and though the experience of physically getting to them was fatiguing, bewildering and emotionally exhausting, it was well worth it to have seen them.
Ultimately, it's a good thing they ordered and that I survived the PET scan, because it came back "cold." This means that no cancer cells are currently lighting up in my body. This means the second round of chemo totally kicked it's ass! And so there was no emergency admission to Stanford Medical Center, no manic rush to extract my spleen, no more drama of the medical kind.
They simply recommended that I stay the course I'm now on. Which is 96 hours (five days straight) of incredibly strong, toxic chemotherapy, with dosage increasing by 20% each time. This will occur five more times, with three weeks of recovery in between. At that point, they will assess exactly how gone the cancer is. The stem cell transplant will be a possibility then, I think, if they're not satisfied with the level of remission. But they also said that many times stem cell transplants are saved as measure to be performed only in the case of future relapse, like if it were to come back in a few years. And that at that point it usually takes care of the cancer for good.
There are still things to be careful of in the meantime - there are still some points during the post-chemo cycle in which it really is necessary for me to be Bubble Boy. And the Stanford docs asked me to change around a lot of my non-chemo medicines because they were afraid I was getting liver toxicity. But now I have a new team of doctors collaborating with my local one, and everyone is happy to be working together. Now we can all just try to relax.


  1. Kia. Good heavens. I send you germ-free hugs. I'm glad this post had a (relatively) happy ending because halfway through I was about to cry! Hang in there, kid, like a 1970s inspirational kitty poster (who would put kitties in such precarious positions, anyway?).

  2. Holy Shit Kia Jean. I don't know what's worse, that awful woman with the ugly sneakers or your Dad's major panic attack...but god damn, hearing such good news in the end made my day!

  3. Amazing stuff...glad to hear you have answers. awhhhh...Dr. Dad needs to borrow some of your smoking medicine. Keep kicking butt girl!!!

  4. I have been following your posts and cannot explain why I get nauseous. Oh yes I can. I'm a wuss. But you have drawn me in and I must see this through to then follow your posts of floating on a raft on top of sparkling water. For now, it seems your sparkling water is all those that care for you.

  5. Oh Maybelline. How right you are. Thank you everyone for keeping me afloat!

  6. Yeah, kiss its ass, Sea Bass! Just pretend it's Kenny G.

    Much love from your East Coast gang.

  7. I love that bad-shoe nurse lady was complaining about allergies to someone with cancer who's about to go through yet another grueling and strange test.

    The results of that terrible test sound good, though. Great even.

  8. Kia,
    Got the news from Emma.
    Lymphoma. And then pop's anxiety attack. Confusing and aggravating? Certainly unbelievable.
    I think I've only got one little, tiny piece of advice, which I try to keep off of blogs, which is for you to consider watching a SHITLOAD of comedy movies. Is that strange that after 34 years of life that's all I got? Maybe. But Dumb and Dumber is just funny. And so is the swedish movie "Together". Gene Hackman in Royal Tannenbaums. Anyway, you get the picture.
    Get it? The picture?

    Want you to know you've got people out here pulling for you.
    Here's to a Taco Hell fart fest sometime in the future.

    feel free to email -