Wednesday, March 30, 2011
Tuesday, March 29, 2011
Sunday, March 27, 2011
Friday, March 25, 2011
It was Wednesday. We had just returned from our outing du jour—a drizzly excursion to 7-11 and the grocery store—and Annie and I were laying in bed watching Forgetting Sarah Marshall when I had the sinking feeling my fever was creeping up. (Living with an ongoing fever of 99-100.5 for several weeks, you get pretty good at sensing when things are going out of range.)
Sure enough, 101.7. And then, thirty minutes later, 102.2. Sigh. The parents had to be alerted, and they were of course alarmed, and before Jason Segel could charm Mila Kunis back into his arms with his Dracula puppet rock opera, I was on my way back to the hospital. Sigh again.
*What could have caused that fever spike? Worst case scenario: bacterial infection. Best case scenario that I kept clinging to: maybe the hot Neti Pot water I poured into my face right before I laid down just caused a simple spike in body temperature? Seems possible, no?
Anyway, the big concern is that since the cancer has caused my white blood cell count to drop so drastically, my immune system is so inept at this point that the simplest little grubby germ could totally wipe me out. Or at least render me too sick to begin chemotherapy. I kind of realized this before—see the mention in the last blog post—but now it's gone to a whole new level.
And so it's back to the sardine room, the tv on the ceiling, and an even uglier view of an even uglier pole. (See photo. As far as Annie knows, this is what California looks like). But of course it is the safest measure, and it must be taken.
As soon as I arrived they did a blood culture to see if I had any infection in my blood. Novelty here: instead of the normal little vials they usually put your blood in, the nurse showed up with four mini hot-sauce bottles. Seriously, double the size of a Nip. Maybe three Nips large. They had a little fluid in them already (to mix with the blood and see what bacteria showed up) but the volume of blood they could fit in them was shocking. Also, sorry to the squeamish, but I have to say that when mixed with the bacteria culture, it looked exactly like Tabasco.
The bummers started rolling in when the nurse announced very early on that, again because of my susceptibility to infection, I was to be put on what they call neutropenic protocol. This means excessive measures must be taken so I don't ingest or otherwise receive any bacteria. The first thing to go was fresh fruits and vegetables. (?!?!?@**#%!!!) Bye-bye, Superfood Green Smoothie I'd been drinking for breakfast every morning. Bye bye, avocado-a-day regime (?@*&^!!*!) Bye bye cilantro, parsley, or any other friggin living thing that could have been touched by a pesticide or bacteria-ridden human hand.
The next day I had two visitors. They didn't realize I was going to be hospitalized when they rented a car and drove down from San Francisco, and I was quite relieved when they were able to scoot right past the giant STOP sign on my door and weren't even forced to wear masks and plastic gowns while we all hung out in my cell. I mean, room.
They were kind enough to take Annie out for her first trip down Main Street for some Mexican-food-and-margarita action, and as they planned their outing my stomach started thinking about refried beans. Mmmm....mushy, salty, lardy refried beans, it said, in Cookie Monster's voice. You could probably eat an enchilada, too, Stomach Monster added greedily. Yes, I thought, I probably could. A veggie enchilada, I reasoned, not all cheese. But with a little cheese in there, said Stomach Monster, and a little more melted on top of the beans...
YES! I took over. A veggie enchilada with green sauce and refried beans! My first taste of real Mexican food in the whole time I've been back home! It will all be cooked and I will tell them not to put fresh salsa in it so I'll be safe, and I will eat every bite and love it and eat like I haven't eaten since my spleen took over my insides!
And then, of course, I was neutropenically cock-blocked. The nurses did not have any faith at all in the hygienic protocol of our fine local Mexican eateries (perhaps rightfully so, I can now grudgingly admit) and so my sweet friends were banned from bringing me back any edible contraband. Off they went, with Annie in tow, to feast on the only kind of local cuisine in Visalia worth eating, and I was sent a styrofoam cup of undercooked baked beans from the cafeteria. Sigh again. Stomach Monster was pissed.
"Where," some may at this point be wondering, "have all those blessings gone? And so quickly too?" Don't worry. I know they're still there, and I'm lucky to be in such a safe place with all these people looking after my welfare and making sure I don't tank before I even get started.
But I reserve the right to mention that safe isn't always very fun. And what fun is a cancer blog without some relatively good humored complaints?
As Larry David would say, "No Good?"
Wednesday, March 23, 2011
My oncologist called yesterday with some hopeful news. The preliminary results of the bone marrow biopsy indicate that my cancer is probably some kind of large cell lymphoma, and not acute leukemia. This, he says, would be a good thing. He sent my slides to UC San Francisco to get a final confirmation on the diagnosis, so I still won't know exactly what I have or what the plan is for a couple of days.
Monday, March 21, 2011
Which means it's very clear to me how to go through this.
There are only two things to fear, death and pain. Death is not an option for me at this point, so that just leaves pain. And pain can be tolerated.
I will get through it, and I will find the humor and the grace and the silver lining in each day—so much easier to do when something like this suddenly bombs your life—and I will have fun when I can, and laugh as much as I can, and I will write about it. And life will go on and jokes will be told and blah blah blah. You know, CHOOSE LIFE!
So, the picture is of me in the hospital last night.
Annie is with me now and as soon as we popped off the plane my dad rushed us to the hospital like I was a lady going in to labor.
The hospital room was, for the record, far inferior to Annie's old digs at Cooley Dick in Noho. Ancient TV barred to the ceiling, toilet behind a curtain, view of a pole. Our jaws dropped a little. Where was the flat-screen TV? The Guest Couch? The private bath?
Of course, that's all cosmetic. It's the care that counts, and it couldn't have been better.
The doctors—wheels greased by the not-so-invisible hand of Dr.Dad—moved quickly and in less than 24 hours I was able to have 2 important tests: CT Scan and Bone Marrow Biopsy.
For me the CT was kind of like a Disneyland ride. You lay down and are propelled in and out of this futuristic-looking radioactive donut, while a lady robot voice periodically tells you when to stop and start breathing.
My CT tech was a very kind guy red scrubs named Clifford, "like the big red dog," he said.
"I'm Kia, like the car," I said.
Then he warned me—grinning— that the contrast dye they'd use to see my insides better would make me feel warm all over, including in my junk, and that I might feel hot down there like I was peeing.
"I'll try not to pee," I told Clifford as he warmed up the machine.
"If you do," he said, "I'll laugh at you."
The Bone Marrow Biopsy was less amusing, but not as painful as it could have been. (They numb your muscle and bone surface first). Really, it's the knowing that someone is screwing a rod into your hip and pulling out bone bits that really f*cks with the mind. But the pain? Slamming your finger in a door hurts worse.
Finally, on to what everyone is really wanting to hear. The results:
Bone Marrow results will take a few days, and those are the really definitive tests that will tell me what exact kind of cancer I have (lymphoma or leukemia) and what stage it's in, etc. Then and only then can treatment decisions be made.
The CT was fascinating, as I was able to see the pictures of my trip through the Donut, and understand why I haven't been able to eat or poop in weeks. My spleen is now 8 times its' normal size, and is very probably where the cancer cells are emanating from. (Nobody said the word tumor, but maybe it goes without saying?) My stomach is a tiny marginalized pocket and it, along with all my other digestive organs, are now sitting somewhere much closer to my pelvis than they would otherwise be.
Still, the Oncologist (cancer doctor) said there was no reason to keep me hospitalized while I was waiting for the test results. Another blessing. Now Annie and I are relaxing in comfort, living in the moment, and waiting. And we are ok.
It's morning and I’m sitting at a café, sipping both chamomile tea and lemonade. My best friend is across from me doing homework. I’m holding a Mary Karr memoir while actually engaging in a medium-grade text argument with my girlfriend in Massachusetts, which is taking up most of my mental space, until the phone rings.
Aunt Coral. I let it go to voicemail.
I don’t always listen to my messages right away. This time I do.
“Hi Kia, it’s Aunt Coral. I just talked to your mom and I wanted to say how sorry I am that you’re going to have to go down this road—“
I stop the message. What road? What does she know that I don’t know? My stomach drops, chest starts pounding.
I immediately call my mother. What has she not told me?
“Did you get the test results back?”
“Not yet sweetie,” she says.
“Well I just got this message from Aunt Coral about the long and lonely road I’m having to go down, and it sounds like she knows something I don’t.”
And then she is breaking down and admitting that they did get the results back, that they were just going to wait five more minutes to call me, and saying words like lymphoma and leukemia and bone marrow.
I can’t believe we are talking about me, and that I’m sitting here in this backyard café hearing my mom tell me that I have some kind of cancer while all the other people sitting around me (probably) don’t have cancer and don’t realize and can’t realize that this is the news I am getting on my phone right now. And would they care if they knew? How would they feel to know that someone in their midst was having this very life changing conversation while we all sipped our breakfast drinks and sat around in the sun?
I guess most people don’t usually find out they have cancer in the middle of backyard cafes.
There is usually a doctor’s office, right? And a stern looking doctor with papers in his hands.
Then Abby and I drive downtown for our hair appointments. We had made them days earlier. Should I not get a haircut because I now have cancer? I can’t find a reason why not.
My mom appears on the phone again with far more information than I can process and the grim suggestion that maybe I shouldn’t waste money on a haircut since, after all, I’d be having chemo within a month.
“Find a new angle, mom,” I tell her, completely put off by her perspective, yet worried somewhere that I’m being an ungrateful brat. Cancer or not, my relationship with her is never without it’s conflicts.
Then I’m sitting through the longest haircut of my life, and I’m bluffing through all those generic conversations you have to have with people who cut your hair and clean your teeth and such. She’s asking where I live and what I do, and she heard I was getting married and when was that happening? And the whole time I’m describing the life that was my life yesterday, but is no longer my life today, or tomorrow, or any day I can yet forsee.