Follow by Email

Thursday, December 1, 2011

Back to Life, Back to Reality

Outside my window, yellow leaves are swirling down from the trees into the garden below. Through the opposite windows of the courtyard, I can see hospital staffers coming and going like ants in a child's plastic ant farm. In my room, I'm surrounded by medical equipment and more disinfecting products than I ever thought I'd see in one day.
The stem cells come in in five more days. I've been here for four days already, and it's just starting to sink in today how very long I'm going to stuck here.
Turkey Nuts
I'm definitely experiencing a bit of a comedown after all the exhilaration of my pre-hospital adventures. Driving up into the mountains and down the coast, re-visiting Esalen and receiving some healing touch, pulling out the old Razzle Dazzle for a Karaoke night with some of my best peeps, sharing Thanksgiving with my little family, and welcoming my parents-in-law to California and some of my favorite places....all those things sure were fun, footloose and seemingly cancer-free. 
Now I lay here and receive my treatment, which today includes one kind of chemo and some fancy Rabbit Serum that's supposed to lower my immune system. Yes, it's safe to say that I officially feel at the height of my Cancer-Patient status. Knowing I'll be in this room for about a month, knowing I have to wear the HEPA mask every time I step outside, missing life as I've known it forever. I know it does no good to dwell on the past—how much I miss my old life in Northampton, my friends, my job, my dog, my family there—but neither does it do me any good to dwell in the future - i.e. "when will I get out of here? Will my cancer come back? What if it does? etc etc."
I can only be in this moment, in this bed, in this place, with this view, one day at a time.

Sunday, November 27, 2011

Submissions for the Ultimate Stem Cell Mix

We just got in to Palo Alto after a long and gorgeous drive up Hwy 1. Tomorrow I get up at 7 am to get my Hickman Catheter implanted and then get admitted to the Hospital for my stem-cell transplant (and 30+ day stay) in the afternoon. 

The big event today though is that Annie and I recently decided there should be a "mix tape" that I listen to every day while my new stem cells are roosting and taking care of business. Here are a few songs we know are going on the mix:
1. In the Hall of the Mountain King by Edvard Grieg
2. Rhapsody in Blue by George Gershwin
3. Feelin' Groovy by Simon and Garfunkel
4. All That Jazz & When You're Good to Mama from Chicago
5. Bamboleo by the Gypsy Kings
6. Shakedown Street by the Greatful Dead
7. Damn it Feels to Be a Gangsta by Ghetto Boys
8. Dreadlock Holiday by 10CC
9. Everybody's Free by Quindon Tarver
10. Love and Happiness by Al Green

That's just the beginning. But we also realized this could get so much better if we opened it up to everyone else. What songs would you put on a mix tape to make my stem cells twinkle their toes, rock it out, and build me the best immune system there can be?
Let us know, and we will post the Ultimate Stem Cell Mix here, at a later date.
Love!
K + A

Friday, November 18, 2011

I've Been a Bad Blogger

But I am OK! These past few weeks have included hospitalizations in Visalia in between hospitalizations at Stanford, but the complications were routine, expected, and relatively easy to endure.
Having missed so much time here at Californicancercation, there are anecdotes I'll have to spare, which is a shame. Still, there's a lot coming up in the next few weeks I want my peeps to know about:


Highway 1
  • I survived my last (9th!) chemo before the upcoming transplant. My blood cells and platelets are restoring their numbers, and I'm feeling much physically better.
  • I had two tests with good results: A PET CT scan on Oct 27 and a regular CT scan this past week, both of which confirm that the cancer is continuing to be diminished by the treatment. Thank you everyone for your prayers and good wishes! So anxious was I heading into that PET scan in late October that I memorized the 23rd Psalm in the waiting room so I could recite it during my 40-minutes in the machine. In stories such as mine there is usually a moment where the protagonist breaks down and prays, to whoever they think might be listening. This was my moment. I find the 23rd Psalm to be a very comforting, reassuring prayer, though I prefer to say "I shall dwell in the hills of the Lord forever," rather than house of the Lord. It just seems more appropriate for me.
  • My brother-in-law Samuel H. Clarke is arriving for a visit today, Nov 18. He, Annie and our friend Kelly Brannam will be driving to her cabin on Bass Lake for the weekend. Time for another Fun Cancer Roadtrip! These have become more rare occasions of late. So looking forward to some time spent amongst the trees.
  • Monday Annie and I are dropping Sam off at the airport, then heading over to The Esalen Institute, where we will each receive a fan-fucking-tastic massage, at the glorious Esalen Hot Springs, on the edge of a cliff overlooking the Pacific. 
  • Monday night we will drive to Morro Bay, to visit with my dear friend Abigail Riley and her family.
  • Thursday we will have a home-cooked Thanksgiving, courtesy of my wonderful mother Barbara E Bowman.
  • Friday, November 25, Annie's parents arrive! They will spend a day and night taking in the sights of Visalia (whatever that means) and the next day we will cruise back over to the Central Coast and take them along our favorite drive, the famous Highway 1. They will stay with us as I am admitted to the hospital at Stanford for transplant.
It is important to have all these good times to look forward to, as Monday, Nov 28 I begin preparations for my Haplo-Identical Stem-Cell transplant. My mama, the aforementioned Barbara E., was found to be the most appropriate donor in this still-experimental treatment, and has already gone through the process of having her cells harvested.
I'll get very heavy chemo all that first week, and my new New Birthday, where they administer my mother's stem cells will be December 6. There I shall remain for 30 to 40 days, until mama's cells take root and begin producing the bodily essences I'll need for survival (blood cells, platelets, immune system, etc.) 
I imagine I'll be pretty distracted these next few weeks as I run around California and enjoy my last days of pre-hospital freedom. But I promise to continue the dispatches from the transplant, and beyond. 
Please keep me in your prayers! I am full of hope and optimism about the transplant, but need all the good luck I can get.

In the meantime, enjoy the WEDDING PHOTOS by our official and completely awesome wedding photographer, Sara Acton.

Tuesday, October 18, 2011

A Glass Case of Emotion (!)

I believe Ron Burgundy says it best:
I AM IN A GLASS CASE OF EMOTION!!

Although I'm a person who writes, for me, being depressed doesn't come with many words. It is just an overwhelming feeling inside that manifests in long bouts of sobbing and spontaneous weeping at any given moment. It's not specifically related to sad thoughts, either. More just like a way of being. Like Ron says.

No matter how many words of kindness and encouragement I receive—and they are pouring over me from all sides, from people and places I'd never expected, in great waves of goodwill—there are just some days where I can't slap a smile on it. 
Recently, the only person who sees all sides of me (Annie) gently accused me of trying too hard to hold all the sadness in. She makes a good point. In the presence of almost everyone that is not her, I put forth what has turned out to be an impossible effort to seem unfazed by the cancer drama that is my life. That seems silly, you might say, and when I see it on the screen here in black-and-white, it is. But there it is—some instinct inside that urges me to act like everything is A-OK, even though my life is in jeopardy and has rapidly spun drastically out of control.
Another family member mentioned to me that here, on this blog, I "turn straw into gold for [others]." I suppose she must be referring to my choice to try to keep finding and shining the light on all the silver linings in this process. While I think is important to continue appreciating all those silver linings, for everyone's sake, I also recognize my decision to make myself appear as positive and good-natured as possible, for the sake of others. 



Sunday, October 9, 2011

A Room With A View

No-Window Face
The rooms at Stanford are much bigger than the ones at Kaweah Delta, but they're doubles. When I first arrived this time, my roommate had the bed with the window. I got the bed by the door, and was surrounded by nothing but vile florescent light and hospital curtains. 
It turns out that a view of a pole is better than no view at all. 
Mercifully, below is the view from our new room. We were graced the opportunity to transfer into a better room today, and I can now testify to the Difference A Window Makes. How dare they ask anyone to stay on the Bad Side of the rooms? 
Still, this is Stanford, so there are plenty of improvements to be found outside the unit. The gardens here are lush and elegantly sculpted, a world away from the pigeon-poop covered patio at the hospital back home. They provide live music sessions in the Atrium at lunchtime twice a week, and a decent menu from which I can custom-order at my leisure three times a day. Annie gets her very own cot, and the TV has the Food Network. 
It nice to be somewhere busier with a bigger budget, although I have to say I have nothing but love for all the nurses that have been taking care of me at home. 


New View
It's been a hard week for everyone. I was hospitalized twice since my last chemo, once for a blood and platelet transfusion and again the next day when I started running a fever and developed a crushing headache behind my eyes. (It is normal for these things to happen, as these are signs that the methotrexate is doing its' job.) On the other hand, these episodes can be quite scary. 
I've never seen fear in a doctor's eyes like the ER doc's when I came in with the fever Sunday night. I assume he's used to treating more straightforward trauma—gunshot wounds and drug overdoses, knowing the Visalia crowd—so I when I showed up with six months' history of aggressive lymphoma and potentially dangerous chemo side effects, he looked like he wanted to panic, or maybe cry. He was about to order me a risky spinal tap and a painful catheter with which to take a urine sample when my Oncologist showed up. Like my own personal white knight, he immediately declared those measures unnecessary, and also made the important declaration that I was not, in fact, developing spinal meningitis. 
It was a significant moment when Annie and I realized a few hours later that if I had contracted spinal meningitis, it would have been curtains for me that night. I love and trust my Visalia Oncologist tremendously, but even he can't save me from random deadly infections. This knowledge, along with the feeling that there are certain developments I can't control no matter how hard I try, gives me the uneasy sensation that I could be whisked off the planet with a giant Vaudeville Hook at any given moment. I know it's not necessarily true, but right now I do sort of feel like I'm living on borrowed time. Every day is a gift, at this point.

Saturday, October 1, 2011

Looking For My Perfect 10

I had two important conversations yesterday.  
We had a standing appointment with my Oncologist to get my blood levels tested and check in with my body after this last round of new chemo. Interestingly, most of the meeting turned into a conversation about life and death, and the style in which I'd prefer to bridge the gap.


Essentially, whether or not I'll choose to have the Bone Marrow/ Stem Cell Transplant has now come into question for me. After this talk with my doctor—who I know considers me like one of his children and gives me the same advice he would give them—I feel I'd only choose to go through with it if there are great odds of me surviving (the transplant itself). For those odds to be good, I need to meet two criteria:
I need a "full match" Donor, and I need to be in complete remission. We won't know how this chemo has affected the cancer until after I get another dose (next week) and then wait the standard four-week clearance period. I'll then get re-scanned and we'll see how far into remission the cancer has or hasn't progressed.


The second conversation—which took place immediately after the first, as we were dazedly walking through the parking lot of the Cancer Center—was with the Bone Marrow Transplant Specialist.
She called to tell us that out of the entire national Bone Marrow Registry, there are currently no full matches that would work for me. (They match people on a 10 point scale. I need a 10-point match. There are some 8 pointers out there, but those won't cut it).


So this is it. My call to arms. The time has come. Please consider joining the national registry, in hopes that you might be the match for me! And please help me spread the word. ANYONE could be the match, but people with a Persian/American background, like I am, would be especially desirable candidates. 
Joining the Registry is easy and fun! Their website is very comprehensive and tells you everything you need to know about how to find out if you're a match (cheek swab) and what would happen if you did become a donor. 


Onward to get a blood transfusion. Mad love to my peeps.



Tuesday, September 27, 2011

September Setbacks

Reunion Faces
One thing I feel tremendously grateful for is that our wedding—and the entire time I spent in Mass, reuniting with friends and family—was completely carefree. Cancer couldn't have been further from my mind. All I was thinking about was celebration, and the feeling of coming back full circle to greet the people I'd never gotten a chance to say goodbye to in the first place.
Of course, everyone had the same question for me: when are you coming back for good?
"Oh, about six months," I'd say casually. "Just gotta go back and get this stem-cell thing done with, snip-snap, and as soon as I've recovered I'll be back! Probably right around the end of winter, don't see a need to rush back for February, ha-ha."
However, there was a hidden subtext in my response that I didn't understand at the time. That subtext was: This cancer is in the bag. I've got this under control. It's all going to go exactly as planned, I'm sure of it.
The thing is, five days after we returned to California, I learned that cancer is never in the bag, except maybe several years into remission. Or perhaps longer than that, I'm not sure. I have no control. Plans are made to be changed. And nothing is guaranteed.



Tuesday, September 20, 2011

Marriage in Massachusetts

Our wedding was perfect.
As a recovering perfectionist, I don't take that word lightly. Most of the time, there is almost always some detail that could be improved upon, some fault to be found if you look hard enough.
But I would not change a thing about our wedding. Not one single moment.

It felt as if the seas parted just for us, to make our wedding possible. Hurricane Irene came and went, just in time. The sun came back out, the floodwaters receded, the roads were opened and the flowers and the caterer both survived the deluge. 
No tantrums were thrown, both families got along, everyone looked their best, the food was fantastic and we danced in that barn 'til we couldn't dance no more. 
Best of all, Annie and I were officially joined as Partners In Marriage—at least in the eyes of God, our families, and the State of Massachusetts.





Sunday, August 28, 2011

Hurricane Irene—Bringing Out My Inner Bridezilla

In my last post about television, I conveniently forgot to mention one of my biggest guilty pleasures. And no, it has absolutely nothing to do with creative people putting their talents to the test. Bridezillas is a reality show on TLC that spotlights brides-to-be behaving badly. Very badly. Truly, some of the women on this show are a handful of the worst examples of humanity you could ever witness. Screaming at their mothers, bitching at their bridesmaids, and usually treating their fiances like something that crawled out from a crack in the pavement.
Many of them spend the week leading up to their wedding sporting oversized t-shirts airbrushed with the word Bride, and stand in front of the camera flailing their arms, yelling at their friends/moms/future husbands, "this is going to be my special day! This is the most important day of my life! You're going to be feeding me grapes while I'm getting my hair done! I hate you! Don't talk to me! It's my special day! Mine!!!"
Each episode leaves you wondering, why would anyone ever want to marry this woman? Sometimes their male counterparts actually threaten not to show up for the Big Day, and I'm always hoping they'll follow through. Shockingly, they never do.
Up until yesterday, part of my enjoyment of this show was how superior it made me feel. I am nothing like these people, I'd think smugly to myself. See how mellow I am? I'm getting married while I'm bald. My dress is from Banana Republic. I'm so down-to-earth. 
I'd always thought that I'd remain unfazed no matter what kind of complications arose surrounding the wedding. I wouldn't be the girl to flip out if I spilled wine on my dress, if the food ended up overcooked, if it rained a little and the reception got moved into the barn. The important thing, of course, is simply to stand and declare your love in front of friends and family.


Enter Hurricane Irene. 
So. My flight is scheduled to land in Hartford, Connecticut at half past midnight tomorrow, Monday the 29th. The wedding is September 3.
By Friday night (the 26th) I was freaking out that either a) my flight would be canceled or b) I'd get bumped from my flight so my seat could be given to someone else who had missed their flight over the weekend. I don't know where I got the idea that such a thing was even possible. I guess I was operating under the assumption that airlines are Never Fair, and reserve the right to screw you over at every opportunity. Apparently, this practice of "bumping" people was a complete figment of my imagination. Regardless, that's when the panic started setting in.
My anxiety was only worsened by the fact that the American Airlines website declared that flights canceled in the wake of Irene could take up until September 4th to be rescheduled. The wedding, as I mentioned, is September 3rd.

Friday, August 26, 2011

Annie Left and I Took a New Lover—Television

This blog has been a little heavy on the introspection as of late. While Deep Thoughts are to be expected from a Cancer Blog, lately the currents have been running a little more on the shallow side.
I'd wondered how I'd pass the time without Annie. I thought maybe I'd be forced to confront my inner demons, face boredom head on, and transform into a deeper, more evolved Self.
Instead, I gave myself over completely to Television.

There is one perspective from which this can be viewed as a positive transformation. 
I have written before about my inability to relax. How so much of my time in Visalia as a cancer patient has been spent avoiding a sick-bed. How, before and during cancer, any time I'd think about laying down and flipping on the Tube there was always that voice in my head saying read more, learn more, do more, cook more, yoga more, clean more, DON'T JUST SIT THERE!! Your brain will atrophy! (Yes, the voice sometimes does sound a lot like Dr.Dad, who hates television with every cell in his highly-toned, athlete's body).
So, if you look at it one way, honing my ability to lie in bed for hours in front of the TV and feel no restlessness, no judgement and no anxiety, just sheer bliss, can potentially be seen as Progress. It helps to have a cozy spot. (See photo)
My Television Nest

Tuesday, August 9, 2011

Family, Norma and the Ultimate Gift

Golden Gate in the Fog
Yesterday was my Grandmother's 90th Birthday. Unfortunately, she was not able to celebrate, or even have awareness of this milestone. She has reached a very advanced stage of Alzheimers, and is locked inside her body in a place nobody can really reach.
Dr. Dad and I went up to visit her at her nursing home in the Bay Area this weekend, after having stopped at Stanford for a routine check-in with my doctors. Everything on that front appears to be going as planned—which is great—so there's nothing really noteworthy to report about the visit, other than the very first thing out of Dr. A's mouth when he saw me was, "Ohhhhh! You've gained weight!" 
Just what every gal wants to hear first thing as someone walks into the room. 
(I get it, it's healthier than being underweight, it will provide extra protection during my feeblest moments of stem-cell procedure. Still.)


The last time I saw my grandmother, about three and a half years ago, she was in her apartment under the care of live-in helpers. Her mind had started to slip, but she still recognized me and let out an excited cry of "Kia Joooooon!" (a Persian term of endearment, as she is my Iranian grandmother) then shed a few happy tears. 
She and I have never been able to make much conversation, as English is her second language, and by the time I was able to relate to her as a teenager and then an adult, her hearing had started to go. (Dr. Dad had not felt it important to teach me Farsi, his native language, when I was a child and therefore a sponge of language acquisition. This skill would probably be very useful to me now, but I try not to hold that against him anymore.) 
Anyway, it never seemed to matter that my grandmother and I couldn't make small talk. Whenever I visited she'd launch into high-pitched exclamations in Farsi, pinching my cheeks and planting kisses all over my face, fussing over me like the I was the only granddaughter she had (as I was). 
She also had a practice of cooking up a tremendous batch of ghormehsabzi, my all-time favorite Persian stew. It involves a mountain of mixed greens and herbs, cooked down and mixed with kidney beans, beef or lamb, dried limes, and served over saffroned basmati rice. With pita bread. And cucumber-mint yogurt. MMM! My grandmother would then demonstrate the depths of her love by feeding me bowl after bowl of the stuff. A common practice with grandmothers, no?
How I wish I could have made her a pot of ghormesabzi yesterday, in return for all the loving and feeding she blessed me with over the years. 

Sunday, July 31, 2011

Fear, Marriage and Separation

Before I got cancer, the plan was for Annie and I to get married. The wedding was supposed to be on September 24. It was gearing up to be a pretty big event, with close to 150 guests—over half of that number her relatives—and all of my best friends flying out from California. 
We had booked a venue, a historic Inn that bordered on her brother's property in Greenfield, Mass. We'd met with a caterer, tentatively planned a menu, and gotten all jazzed about serving our guests on compostable plates that would somehow be used to feed local cows the day after the party. I'd even bought a dress, an elegant, ivory-colored BCBG gown that perfectly suited my offbeat-bridal aesthetic. 
And then, less than a week after the dress purchase, came the Cancer Diagnosis. Once that happened, we almost instantly agreed to postpone the wedding. There were too many unknowns ahead, it seemed, to just carry on as planned. I imagined I'd be much too sick from chemo to deal with the stress of planning, not to mention actually getting through the event. And who wants to be a sick person on their wedding day? It seemed like the Obvious Choice to focus on getting through the Cancer Experience, and then come together with all our loved ones to celebrate not only our union, but my survival. 

Friday, July 22, 2011

Round 5 Hospital Hijinks

We're keeping things pretty upbeat over here for Round 5. 
First of all, we had two unexpected visitors this week:

Annie and Emma (Great Dane)
Annie and I had already gotten into bed on Wednesday night and were curled up watching So You Think You Can Dance on our ceiling-mounted television set when one of the nurses poked her head in and asked, with a very confused expression, "were you expecting a visitor with a Great Dane?"
"Yes!" Annie called out immediately, not because she had expected it, but because those are her favorite dogs.
"Um, no, not exactly," I said, "but send them up!" 
Who wouldn't want a late-evening visit from a giant Horse-Dog?
It turned out that my mom had been at a meeting with the local hospice, and Emma is one of the dogs that's trained to hang out and cuddle with hospice patients. 
Even though Annie and I are more animated than her usual crowd, she was very sweet and mellow. There wasn't much space for her in our cramped little room, so she just mostly laid on the floor with her head between her paws. Annie immediately got down on the floor with her and cradled her head, while I took pictures and patted her flanks.
It turned out to be a good thing I didn't get too intimate with Emma. The next day my mom called in a panic, saying she'd just heard from Emma's owner that poor Em had been diagnosed that very day with a digestive parasite called Cryptosporidium. Like Giardia, it's a water-borne parasite that causes diarrhea and other abdominal discomfort. It's treatable, but would obviously put a kink in all the cancer-treatment agendas. Luckily, neither Dr. Dad nor my oncologist are overly worried about it. At least I remembered to wash my hands after petting her! 
Kia and Kia (Schnauzer)
The next surprise visit came yesterday, from a much smaller hospice-dog whose name also happens to be Kia. A sweet little Schnauzer, she laid on the bed next to me and panted away under her long white beard and tufty eyebrows. I did play a little kissy-face with her—this was before we got the news about the Crypto—so hopefully she was not carrying any amoebas or other saliva-borne pathogens. 
There really is something heartwarming and uplifting about getting to hang out with animals while one is in an otherwise depressing and cloistered environment. Just stroking their fur, gazing into their deep, dark watery eyes, sharing comforting little cuddles, it brings this cancer patient—and every other kind of patient, I'm sure—an extra dose of life. To hell with hygiene, I say. Bring on the dogs!  


Unfortunately, after the Crypto incident, it does't look like I'll be having any more canine visitors this round. So it was up to Annie and I to entertain ourselves. This was accomplished with the help of a fine old friend of mine—shout out to you, Lydia Osolinsky!—who just happened to have randomly sent me a care package that included stick-on mustaches the very week that my oncologist shaved his off. 
He usually comes by on his rounds around 8 a.m., so this morning at seven thirty, before I was even fully awake, I stuck on my mustache and slipped back under the covers, laying in wait for his arrival. 
The look on his face was pretty priceless when I sat up in bed, sporting a thick furry mustache very much like the one he had so recently parted with. I got a good laugh out of him, but it was the nurses who really got a kick out of it. A small stream of them poked their heads in to see what all the fuss was about, so naturally Annie and I both had to oblige them with a photo session, which I believe they will be printing and posting in the ward. 
Is it Annie? Or famed serial killer H.H. Holmes?
No Stage - I mean - No Stache
Kia as Dr. Havard, with his "you're going to be just fine" expression
An entertaining morning for everyone!

Friday, July 15, 2011

The Wonderful World of Fo Stage and No Stage - a little book within a blog

Fo Stage and No Stage have been busy the past three weeks! 


There was one hospital stay, but that was so uneventful it doesn't even get its' own chapter. The only remarkable element was the woman next door, who hollered for the nurse all day, every day we were there.
One day, around 11:00 a.m.,
Lady : "Nurse! Nurse! I poop! I poop!"
Three seconds later : "Nurse! Nuuuuuuuurse! I poop!"
Five seconds later : "Nurse! Get me a cigarette!"
Two seconds later : "Nurse! Please, get me a cigarette, I'm dying for one!" 
Really, that's all there is to say about the hospital.


Far more exciting are the tales of the adventures we have taken, the journeys we have made, the fears we have conquered, and the laughs we have had along the way. 
In the three chapters below, you can follow Fo Stage and No Stage through what have turned out to be some of the best times of their lives. Come along for the ride!

Chapter One: A Camping Trip - With A Buddy!

It was the perfect time for a camping trip. 
I'd been depressed for the entire month of June. Just "giving it time" didn't seem to be helping things. Each morning I'd wake up, contemplate the inevitable expanse of day in front of me, and just cry and cry. So I talked to both sets of doctors about it, and to no big surprise of mine, they recommended anti-depressants. What the hell? I figured. After the depo-provera shot, the Prednisone spikes and, oh yeah, the chemotherapy, I figured one more pharmaceutical would just be another ripple in the pond. If it made me feel better, I'd keep on taking it. By time Scott rolled into town, I had tried and rejected Prozac. (I thought it was amusing though, that after all that aforementioned medicine, the only thing to give me the runs would be freakin' Prozac.) I hadn't started the Paxil by that point, which I am now taking and appears to be doing more good than harm. Still, as soon as our trip began, the little storm cloud that had been following me around magically vanished. We had a spectacular time. 



Chapter Two: Independence Day

July 4 turned out to be a true celebration of independence for Fo Stage & No Stage. 
For reasons that I won't broadcast in this public format, we needed a little space and time away from the family that day. I'd been up most of the night tossing and turning in my frustration, and at 6 a.m. was wide awake, formulating my Plan for the day. 
I woke Annie at 7:00.
"Get up, we're leaving!" I told her. "We're just gonna put the backpack chairs in the car, grab some coffee and go to the river."
For Annie, this little announcement was like being shaken awake on Christmas morning and being told Santa had delivered a new bicycle. A surprise trip to the mountains! On a day that neither of us particularly felt like dragging ass around Visalia. And a holiday to boot!
Plus, being woken up and whisked away on an adventure is not such a bad way to start the day.



Chapter Three: Backcountry

It is Dr. Dad's habit to make a weekly pilgrimage to Yosemite. Each weekend he'll get up at the crack of dawn and drive three hours to get there, push himself up and down a rock slab for six hours or so, and then drive home. He enjoys triple soy lattes in each direction. It is a ritual that makes him happy and refreshes his soul. 
Last weekend was the time between my chemo cycles when my white blood cell count gets low. In cancer-speak, it's my time of being "neutropenic," and it means I'm more susceptible to infection than usual. After some deliberation, Annie and I decided that a camping trip would probably be pushing our luck a little too much, given the general sort of filthiness one accumulates in a weekend of hanging out in the dirt with no shower. Again, I'm not accustomed to caring about germs, but definitely don't want any complications to delay the rest of my chemo treatments or stem-cell procedure. So. Camping was out. But how much harm could one day in Yosemite do? Fresh mountain air, a crisp cool stream, it would do more for my health than another day breathing the Visalia smog. Right?

Wednesday, June 22, 2011

My New Birthday

There have been some game-changing moments in this journey of mine, and last week's trip to Stanford was a biggie. It's crazy how I can seem to be stumbling along in the dark, then—in a very defining moment—a harsh florescent light flickers on and illuminates the path in front of me. It's like turning on a flashlight deep inside a cave, or, for my Tolkein people, like lighting a torch while passing through the Mines of Moria—a whole host of unpleasant things are usually lurking in the distance.

My most recent meeting with the Stanford people was last Wednesday, and it's taken me this long (about a week) to process those three hours. Some of that time was spent mentally and emotionally adjusting to the new realities that were presented to me, the rest was spent transcribing the interviews we taped with the Transplant Specialist and the Social Worker. 
Was transcribing each 90-minute tape word-for-word really necessary? Probably not, but apparently there is still some residual journalistic nerdiness leftover from my CityBeat days. Plus, I literally have nothing better to do. So it comes as no surprise to me that banging out those tapes actually turned out to be enlightening and therapeutic. We had all come away so overwhelmed and confused by those whirlwind conversations that transforming them into words on a page helped de-mystify them for me, taking my understanding of what's coming down the pike in the next few months to a much deeper level.

So. What is coming down the pike? Three more six-day inpatient chemo cycles and then: a Stem Cell Transplant.  (Click that link if you're interested in browsing a complete .pdf of the pre-transplant info binder they gave me).
Until last Wednesday, the Stanford docs had been holding out their opinions about whether or not I had a Stem Cell Transplant in my future. However they did summon us for a meeting with a Transplant Specialist/Coordinator, so that had to mean something. Right?

A meeting with the Transplant Specialist/Coordinator! That sounded important. Plus, the lobby of The Stanford Cancer Center is so sleek and marbly that every time I come for a meeting I expect to be directed to an elegantly-appointed conference room, with sweeping views of the Stanford Campus and a long mahogany conference table in the middle. (Or at least a fancy wooden desk.) During the meeting, I would then expect to sip mineral water while my slides are put through Power Point. Then, once my case history was thoroughly reviewed, the time would finally have come to discuss the pros and cons of the treatment with my wise, compassionate Transplant Specialist and her highly capable team.

Of course, each time I show up, I am directed to the ground-level clinic, where me and my small entourage (mom, dad, Annie) are shuffled into one of several cramped exam rooms, all painted the exact same shade of tomato soup. I'm also made to wear a heavy flannel hospital gown, which, for the actual amount of poking and prodding they do, is totally unnecessary. My butt crinkles the paper of the exam table as my family perches thigh-to-thigh on folding chairs. We all slump wearily, listening to the medical bustle in the corridor outside, chuckling at ourselves for continuing to arrive with the same illusions. (I know I'm not the only one who expected mahogany furniture.)

When the doctor did arrive, she was kind enough, but they're always rushed. This is not to say they aren't thorough. They are. They're just speedy. One minute she's shaking my hand hello, the next thing I know she's on her way out, saying her nurse will bring me a binder with everything I need to know about my Stem Cell Transplant. I know from my tape that valuable, informed, comprehensive phrases passed through her lips while we all sat in that tiny room together, it's just fascinating how little is retained in the moment. 

The second meeting, with the social worker, was even more overwhelming. We met her in another cramped, windowless room in the bowels of the Cancer Center, this one decorated with inspirational nature posters instead of medical equipment. She was a tiny woman with a very loud voice and, though she smiled a few times and made a couple jokes, gave off a mostly humorless demeanor. 
Other than a few tidbits about my post-transplant care—both tap water and bottled water will need to be boiled daily before I so much as brush my teeth with it, bananas must be washed and dried before they're peeled and fed to me—the biggest thing we all took from that meeting was the new Marijuana rules. As in, I can't have it anymore. At all. In any form. Because anyone going through any kind of transplant at Stanford has to sign an abstinence contract saying they will not consume any drugs or alcohol, including weed (including edible weed as a form of cancer therapy, apparently) for two months prior and six months after the transplant. God. Talk about seeing down the path and seeing it will suck. 

Anyway. The stem cell transplant. Here are the golden nuggets I have managed to grasp that explain why I need to have this transplant and what it will be like:


Friday, June 10, 2011

The Third Lap Around the Ward

What fun are hospital stories when there is no thrilling drama to relate? No next-door neighbor begging to be freed from his mortal coil, no Kia babbling in incomprehensible tongues and no bad nurses to complain about?


There was that Spinal Tap. Wednesday morning I believe it was. It happened in my room, and the whole thing took maybe 15 minutes. My friendly and familiar oncologist did the deed. I curled up in a ball facing away from him, and he put some shots of numbing medicine into the spaces between the bones. Then in went what felt like two giant needles. The second one hurt. I cried. Crying during a procedure slows things down a bit because they have to wait for your body to return to normal relaxing rates before they can continue. After that I didn't feel anything. Apparently they took some fluid out, and it was clear as opposed to translucent. A good sign. They also apparently put some methotrexate in, but I didn't feel any of that business either. Then this morning my doc came in and announced that the cancer tests they did on the spinal fluid came back negative. Hooray!
The next step is to go have a meeting with more Stanford Doctors about the possibility of a Stem Cell transplant. My doctor here is in favor of it, as I think I've said before. I'm pretty sure the Stanford Docs are too. At this point, the relevant question may be more about when it happens than if it happens. 
As my cancer tests have been coming back negative since the first big round of chemo, some people are starting to wonder if it's really necessary to go through six whole rounds before getting to the big finale. This week's was the third. Perhaps only a fourth would really be necessary? We'll see. 
As for the stem cell "transplant," it sounds scary but as I am learning is really more of a glorified transfusion. They take the cells out of your blood (which is easier to get at than some other fluids) and then "clean" the blood somehow of whatever cancer cells they find, regrow the stem cells (in like 20 days or so, I'm hearing) then give them back to you. I'm sure I'll know more after that meeting. June 15. Another trip north with the parents. Hopefully nobody passes out before this one.


But, meanwhile. What of me and my existential crisis, my big grapple with the human condition? Well, it continues. But, like a cork in the ocean—or a turd in the toilet—one must just stay try to afloat. 
This hospital stay has been, as I keep mentioning, highly uneventful, which is what you want most hospital stays to be. Orange-sauce goes in the port, comes out into the pee hat, and another day goes by. I've watched some exciting basketball games—go Dallas!—I am reading a good novel, and Annie continues to be an incredibly good-natured, fun, snuggly companion. We have matched each other well at cribbage games on the dingy patio, watched some good TV (what's not to love about Extreme Make Over - Weight Loss Edition? Each episode is like watching a whole season of The Biggest Loser). And we've watched some bad TV (I'm looking at you, Celebrity Fit Club, about which I will only say that it is hosted by Ant, and if you remember who Ant is, that's your own fault. We did). 


In the hospital there is less of a question about what I could or should be doing when. Except, of course, for the times Dr. Dad passes by to mention that Mozart was 27 when he died, and look at all he managed to accomplish! Or when he stops in to find Annie on her iPad and me at a crossword puzzle, and then suggests perhaps it's time to start learning another language. I find these comments incredibly frustrating and counter productive. Because they actually do make me wonder. Is he right? Am I crazy? Is being in the process of surviving cancer just not enough? I have to say, it has crossed my mind—I seem to be in the process of receiving a second chance at life. Doesn't that mean I'm meant to do something terribly significant with all this extra time? Does it?


Anyway. I'll be out of here tomorrow, which is nice enough to know. After that I'll just have to see what I'm in the mood for. I'm looking forward to going back to my new weight-lifting regimen at the Lifestyle Center and have been feeling a little more inspired to start cooking again. (If only I had a basket full of fresh organic veggies from some hearty Pioneer Valley-grown soil!) Still, even though Save Mart is currently standing in for a weekly organic farm-share, I reckon those seem like healthy, happy, manageable goals for now. And I think that's the best I can do.

Monday, June 6, 2011

Fo Stage and No Stage Visit the Sea

Annie and I took a trip to the seaside last week. I had grand plans to drive her all the way from Santa Cruz to San Luis Obispo on Highway 1, but alas, we didn't get quite that far. It turned out that a substantial part of Highway 1 had slid down the cliff during a recent heavy rain—as it tends to do every so often—so the road was closed midway. I was sad not to be able to take Annie all the way down my favorite part of the California coastline, but still happy to be escaping Visalia.


Instead of making that a big coastal loop, we drove straight over to Cayucos, a tiny little seaside town on the central coast.
It was the day after Memorial Day, and though we knew it must have been a busy weekend at the beach, by Tuesday afternoon when we showed up the town seemed deserted. We pulled in right in front of a fish taco shop and an ice cream store, so naturally we kicked things off by feasting on fish tacos and ice cream (see photo). We also had the good fortune to find a beachfront motel room at the Shoreline Inn...By The Sea!, for shockingly less cash than I'd expected to be charged for a beachfront room. From our deck at the Shoreline that afternoon we watched a pod of dolphins pass through the waves, headed North on some mysterious dolphin mission. 
One favorite moment: Driving up the coast awhile before sunset and pulling off at a vista point to watch the sea. We grabbed our always-handy backpack chairs out of the trunk and set them near the edge of the cliff. There we reclined, looking off into the horizon, as the sun sank lower and lower and sparkled off the water. Soon, two noises caught our attention. One, the gargling, bellowing, snuffling sounds of at least fifty elephant seals lounging on the beach below. I knew that they migrated to this beach every year, but Annie had no idea they were lurking down there and was quite captivated by their size and numbers. Most of them just laid on the beach sleeping, but a few were shuffling about in the sand and a few more could be seen bobbing around the rocks offshore. 
The second sound was a little harder to identify. Thwap thwap thwap! And then again, clearly and unmistakably from the direction of the ocean, thwap thwap thwap! It took a moment for our eyes to focus on the sound, but eventually we saw it: an otter, floating on his back in the foam just offshore, vigorously banging some kind of abalone or oyster on a rock placed on his belly. The thwap!ing went on the entire time we were sitting there, and at one point the first otter was joined by two more. Then all three of them could be seen, up close and personal, little fists clenched around their clams or whatever, working hard to get dinner open and into their mouths. Above and behind us, the clouds turned purple over the hills and birds swooped down into the sea. We were surrounded by nature, and it was so very alive. (Sunset photo taken later that evening).
The next day we visited the pier at San Simeon. I ever-so-casually suggested we walk out to a point at the edge of the bay, and to my great surprise, Annie was interested making the journey. (I had very fond memories of frolicking in the little forest upon that point in younger years with my dear friend Abby, and was extra happy to revisit the trail and the little woods up there.) We hiked through eucalyptus groves, past tall, grassy meadows until we came to the point where the land gave way to cliffs, a small beach below, and then open ocean. We forgot to take a picture from the point, but did remember to take one of it:
Our last day-and-a-half was spent visiting with said dear friend Abby at her parents' house in Morro Bay. Her mother, being a realtor and having a flair for interior design, has decorated the house like something out of an episode of HGTV programming. Like a page of a magazine. (Sadly there is no photo evidence to back up this statement). But believe me, with the windows in the front of the house facing the bay and the ones in back looking out upon golden rolling hills, it felt like luxury palace we would love to reside in—for a lot longer than two nights. If only!
Why oh why couldn't my parents have retired on the coast instead of staying on forever in dreary old Visalia? The question must be asked at least once while laying in Abby's mother's king size bed, staring out the window and watching the sea in the distance—or really anytime one is  contemplating the gorgeous vast blue openness that is the Pacific. Oh, to be able to open a backpack chair and stare into the ocean whenever one had the inkling.


It was a terrific trip. But those days are behind us now. As two weeks have passed since I left the hospital, it is now time to return for another round of orange cancer-sauce. I am sitting upon my latest hospital bed as I type this. 
As for the cancer—what cancer? There may still be some mutant cells hiding out in various nooks and crannies of my insides, but their numbers have been so minimized that I don't experience Cancery Symptoms anymore. I'm getting the impression the doctors can't really be sure when its' gone for good. Hence the excessive numbers of rounds of chemo. Just keep on blasting away at a foe we can't really see, that seems to be the method here. Plus, to take the added precaution that the cancer cells not migrate to my spinal fluid and set up shop in there, I have a spinal tap to look forward to this week. For that procedure, I'm told, my doctor will take a hideously big syringe and inject a nice squirt of oh-so-toxic methotrexate into my spine. From there the drug will travel along wherever spinal fluid goes, exterminating all the cancer cells in its' wake. As I certainly don't want cancer cells hiding in my spinal fluid, I support this procedure in theory. We'll see how it goes down in reality.


Still, things could be worse. Muddy Waters is playing on Pandora, my window lets in a substantial amount of light, and I haven't been hooked in to any tubes yet. Annie is playing poker on her iPad, and things are mellow. So far no neighboring patients have started screaming out begging for death, so that's cool too. I've got my crocheted jellyfish hanging from the IV stand, my inspirational photos on the walls. I have two books to read, a library of crossword puzzle and little game-books, a deck of cards cards, a cribbage board, and more. My gig is rigged, in other words. 
Now I just have to make it through the week.