CaliforniCancerCation

Services and Gatherings

2012-01-31T09:13:00.000-08:00

To ALL who loved Kia....

A gathering to celebrate Kia's life will be held this Saturday, February 4 at 10:00 a.m. at the Lamp Liter Inn in Visalia, CA. The Inn is located at 3300 West Mineral King Avenue in Visalia and can be reached via telephone at (559) 732-4511.

On the east coast, we will be holding a service at Second Congregational Church in Greenfield, MA on Saturday, February 11 at 2:00 p.m. with details of a gathering afterward to follow. Second Congregational Church is located on the Greenfield Common (Court Square).

Kia's Farewell

2012-01-29T13:27:00.000-08:00

Dear family and friends,

We are sad to report that Kia passed away yesterday afternoon. She was surrounded by friends and family, warmth and love, songs and psalms, and an incredible staff of nurses and doctors who worked to keep Kia (and all of us) comfortable in her final days. I hope many of you find comfort in knowing that we read every email, post, and comment to Kia and we know she heard you all.

I share with you Kia's message to us all (by clicking the link here):

http://www.youtube.com/watch?v=GedEOBlAJL0

We promised to ourselves and the world that, no matter what the outcome, ours would not be a tragic story. While we are filled with sadness, we find comfort knowing that our story is so full of love, comedy, and blessings and that Kia is with us all... always. On that note, I share a silly video of the two of us singing here....

http://www.youtube.com/watch?v=tMVG_bnZhS4

Choose Life! It is what Kia wants us all to do....

Thank you for all of your kindness, thoughts, and prayers.

In solidarity,
Annie

Information regarding services will be posted here as soon as possible. We are planning to hold services on each coast.

To all of Kia's family, friends and fans

2012-01-26T10:39:00.000-08:00

Last Sunday, Annie and Kia were happily watching the Patriots punch their ticket to the Super Bowl (or the Ravens punch the Patriots' ticket to the Super Bowl).

Before the game ended, Kia started having trouble finishing sentences and her fever shot up to 103.1. Annie and the rest of the family made the decision to take Kia back to Stanford. Tests revealed a widespread return of Kia's lymphoma with possible infections.

At this point, Kia's brain has been affected. She's been in and out of sleep and, here and there, family and friends get to see short but very sweet bursts of the Kia everyone knows and loves. Kia has been surrounded by a constant stream of very close friends and family. Visitations are very limited at this point but if you have a message for Kia, please leave it below in the comment section or email Annie (annielclarke@gmail.com) by clicking here.

The family is keeping Kia comfortable and honoring her wishes through these hard times as best as they possibly can. At this point, they expect Kia might not make it through this particular battle. They're thankful for your prayers, thoughts and well wishes and they'll do their best to keep everyone updated from this point forward.

Back to Life, Back to Reality

2011-12-01T15:03:00.000-08:00

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.

Submissions for the Ultimate Stem Cell Mix

2011-11-27T22:37:00.000-08:00

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

I've Been a Bad Blogger

2011-11-18T14:38:00.000-08:00

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.

A Glass Case of Emotion (!)

2011-10-18T18:19:00.000-07:00

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.

Sun, Sky, Clouds, Sea - Taken on Hwy 1

So what's the problem? What do I have to lose by baring it all, good bad and ugly?

Well, for one thing people might stop leaving all those "you've got such a great spirit!" comments. That would suck. Although it might be funny to get some "you're such a sad sack!" comments, too.

But it's not just the blog. I put on a front for my parents, I do it for the doctors, I do it for the nurses, I do it for my friends. I do it to everyone, as I mentioned, except Annie. She gets to bask in the glory of all my breakdowns. Not really fair for her, although I have to say she does a bang-up job of it.

Driving Home

It occurs to me that part of the reason I might wear a public mask of okay-ness is that so many people place so much emphasis on "staying positive." Yes, it is important not to get sucked into a bottomless spiral of doubt and fear. Yes, I do believe that a positive outlook is more likely to result in a positive outcome. Dr. Dad likes to relate the story of how Dog Whisperer Cesar Millan gets dogs to change their behavior by holding their tails in the air with string—that way, the body tricks the mind into thinking it's in a good mood. If only I could find my tail.

Still, I feel that there's a qualitative difference between keeping your head above water and putting up a false front.

The thing is, there's a point at which holding your tail in the air all day just gets exhausting. And then it stops fooling everyone.

And that his how I've come to the conclusion that sad feelings—not even thoughts, but physical bodily feelings—must be let out of their cage, even if doing so reveals me to be less-than-perfectly-positive at all times.

So, please everyone withhold your judgement as I declare:

I am sad! I am depressed! I have cancer and I might die and it SUUUUUCCCCCKKKS! I want my [old] life back! I want to go back to Massachusetts! I don't want to live with my parents because I have cancer and it is the only option! I don't want to look in the mirror and see myself all fat and bald anymore! I don't want to die soon! Okay?!?!

There, that felt good. I'm not kidding.

Some of the time, I curl up in the fetal position and wail. In better times, I look for activities that make my tail lift on its' own. The ukulele, seriously, is like a lifeboat. I'm sure scientific studies have been done that show how making music opens up happy channels in the brain. All I can say is that when I'm playing—and singing—I don't have time to focus on any of my feelings. I am completely in the moment. My whole life I've been hearing about how people develop certain passions because they produce this very feeling. Surfing, rock-climbing, painting, cooking, whatever. When people find the thing that makes everything else melt into the background, they stick with it. This is how I feel about the Uke.

Hallelujah!

I'm making progress, too. Gone are my kiddie-music days of Clementine and Home on the Range. I tapped into the Internet and found an entire Christmas playbook to practice on, not to mention soul-stirring ballads like Across the Universe and Leonard Cohen's Hallelujah.

(Annie hates it when I play Hallelujah. She says it's way too depressing. Maybe I just like it because its slow and it give me more time to play the right chords, but I think there's more to it than that. I could play that song—with it's many, many verses—until they pry that Uke out of my cold dead hands. May it never come to that, of course.)

When I'm not playing the Ukulele, I'm thinking about playing it. Annie says if I keep it up and show true dedication to my instrument, she'll buy me a Cumberland Banjo for Christmas so I can further my musicianship. Talk about a carrot on a stick. I may make it through all this just so I can start a stringed-instrument fan club. Or a band. Wait and see!

Yoga is another activity that has come creeping in as a source of relief from my suffering. I've been a fair-weather yoga practitioner for years now, meaning I've "practiced" off an on—mostly off—for several years already. Experience has taught me that it doesn't work quite as well as Uke-strumming when it comes to transporting me to a different mental place.

It does, however, provide a physical antidote to the damage that anguish wreaks on a body.

After a particularly long crying spree yesterday, I emerged from my breakdown with the awareness that my shoulders had slumped and my chest felt like it was caving in.

West Coast Sunsets = Winning

When the heart hurts, it takes the surrounding body parts down with it, I guess.

Thankfully, Dr. Dad is always more than willing to lead us through a Yoga-session. He puts on some soothing music, or some happy jams, and together we try to re-open our hearts, along with all the other sore little corners where stress and tension lie.

In a short span of time, Yoga has gone from being a "should," (i.e. I really should be doing yoga everyday to promote health and wellness in my body) to a "need," (i.e., I need to do some yoga today because my head feels stuck on my neck and I can't stand up straight.) It's nice to feel that relationship changing.

Not to get all sugar-coaty on this, my "tell it like it is" blog post, but do I have to mention how inspiring it is to hear about how many people have been joining the National Bone Marrow Registry in hopes that they may be a donor for me. It seems my circles are ever-widening, and my story is sending many ripples through many ponds across America. (My friend Aaryn Belfer also helped the cause by publishing this story in San Diego CityBeat, the Alt-Weekly Newspaper I wrote for in the mid '00s.) Still, I know there are so many others posting fliers, sending e-mails and doing everything they can to spread the word on my behalf, and to them I am incredibly grateful.

Medically speaking, if a match hasn't been found by the time the docs are ready to go to transplant, it seems likely I will embark into the mainly uncharted waters of "HAPLO-Identical" transplant, where they use a parent's bone marrow instead of an unrelated donor. This procedure has, as of this point, been performed a whopping four times at Stanford, but the docs are very optimistic it still might hold a cure for me.

The timing and details are still up to the cancer. Again, I get re-staged on Oct. 27, at which point we'll see how this round of chemo has worked and go from there.

Still, and this is incredibly important, I would sincerely like to encourage people to continue to join the National Bone Marrow Registry.

Because it's not just about me and this transplant. It is about all the people all over the country who need new stem cells to survive. We won't know until you donate if yours will be the match for me, so let mine be the story that awoke you to the greatness of being a marrow/stem cell donor in general. Science has progressed to the point where donating—and saving a life— is so minimally invasive, it hurts less than a trip to the dentist. Seriously.

Sometimes I can't wrap my head around the fact that so many people are willing to do so much for me—even people who I haven't met. But when Annie reminds me of how much good this effort might end up doing for other people, that's when I know for sure it is right. So, once again, I implore you to join the Registry, if you haven't already. If not for me, because of me.

Much Love.

A Room With A View

2011-10-09T20:10:00.000-07:00

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.

Confronting the possibility of my death is a complicated thing. At first, after the conversation with my Oncologist last Friday, all I could do was make jokes about it. I did the same thing after the initial cancer diagnosis. It's just too absurd to wrap my head around, so I feel like I have to say it out loud over and over again until it really hits home. I do this in a lighthearted, offhand way, to cushion the blow for myself and everyone else.
For example: "If I am dying," I morbidly joked to Annie at some point this week, "I might as well stop recycling now." Terrible, right? But kind of funny in a terrible way.
Like a marble rolling down a very complicated series of chutes and tubes, the reality of me possibly dying sinks in slowly, passing down and across many levels. Over time, the jokes stop and the grief begins, as I struggle with the fact that I'm simply not ready to leave my life behind.
For every new person with whom I discuss these possibilities, I experience two strange feelings. One is that I have the "easy way out." Everyone else has to face the idea of living the rest of their lives without me, but, if it really comes down to it, I just get to roll over and head to the light. The other weird thing I do is apologize to other people for breaking their hearts and bringing this grief upon them. I know this is wrong somehow, apologizing for my disease which is causing others such pain, but as a people-pleaser it is one of my deepest instincts.
My Cancer Counselor tells me it is a good thing to look death in the eye, or at least to acknowledge it as a possibility. He says my challenge is to be able to hold all the potential outcomes with as loose of a mental grasp as possible. Trying to plan for death is ultimately just another way to feel like I have some control over the situation, which, according to him, I really don't. Conversely, planning only for life is an obstinate form of denial that will make things more difficult if that turns out not to be the outcome. So I just have to recognize all the possibilities, and try and stay in the moment.
The amount of control I do or do not have over my cancer is also up for debate. There are so many different theories about the things we can do to overcome this disease, whether it be juicing green vegetables, visualizing the cancer cells dying, or simply "staying positive." I'm not sure how much any of those things can really tip the scale into being cured, but I'm sure every little thing is helpful. The important thing, I keep hearing, is simply to be able to say "I did the best I could." But what does that really mean?
For now, I think that means not getting sucked too far down the vortex of fear. Unfortunately, one of my biggest life mantras before cancer was to have really low expectations about all things, so that if I'm wrong, I can only be pleasantly surprised. It seems like perhaps that is not the best attitude now.

It's going to take another few weeks before we get any significant news about what the next steps will be. I'll have to finish this round of chemo and then wait another two weeks or so before I can get scanned and "re-staged" again.

She Still Needs a Name

In the meantime, the best I can do is to keep doing things that bring me joy. Maintaining this blog is one of those things. Playing my new favorite musical instrument is another.
I've had my ukelele just over a week, and I'm very pleased with my progress. I've basically nailed Clementine and He's Got the Whole World in His Hands. I have some more room to work on Somewhere Over the Rainbow and I'm Yours by Jason Mraz. Regardless, even the beginning stages of banging them out and warbling along gives me a thrill.
How I love that ukelele. It is light, portable, has a delightful wooden sound, and I can sing along with the music I make! Coming off a childhood of parentally enforced flute-playing—an instrument I always felt was fundamentally uncool—I could not be more jazzed about that uke. I intended to practice in the garden daily while I was here at Stanford, but I managed to take it so badly out of tune it has become un-playable. Annie has offered to take it to the classical guitar player in the lobby of the Cancer Center tomorrow and ask him to tune it for me. What a sweetheart.

My Rock Gets a Smooch

Speaking of Annie, I have to add that, as always, she remains the buoy in my stormy seas. Her steady presence by my side helps me to take every emotion as it comes and let it pass again. She keeps my heart light, and we continue to treat every day together as a precious gift. She is such a steadfast, committed, devoted partner, and on top of that, she makes me laugh all the time! Sometimes I can't believe she is willing to go through every step of this with me. All day, every day, in the hospital and out again, each day still managing to love me and be loveable. I truly can't imagine being in this situation without her.

We were able to spend the past few nights pre-hospital in the Palo Alto area, feasting on fine foods and visiting with family. My new brother-in-law Ben flew up from LA with his girlfriend just to have dinner with us—and put us up in the W Hotel for a night. Then Dr. Dad came to sit in on the Friday visit with my Stanford docs. He also took us back to our favorite place for dinner. If nothing else, between hospital stays, we have been dining in style.

Our Last Night Out, the pre-hospital pampering continued as Annie's parents treated us to a stay at a lovely Bed & Breakfast, the Cowper Inn in downtown Palo Alto. They put us up in the Carriage House, a bright white room with gabled ceilings and a teensy little bathroom that reminded us of our apartment on Prospect Street in Northampton. Built in 1895, the Cowper Inn gives Annie a little taste of home.
From time to time I do feel a pang of worry that all these intermittent dinners, hotel rooms and "celebrations" are extravagant and undeserved luxuries. And then I remember what is happening to me, and think that these are the flavors and sensations of life—necessary touches that balance out the grimness of living with Cancer.

Not So Grim Today!

Ultimately, the most challenging thing that has come up in recent discussions my family and I have been having is that I might, at some point in the near future, be asked to re-define my vision of what Choosing Life really means. I have an inkling that it may not turn out to be as literal as it sounds.
I am also really trying to continue to stick by that motto, and so far I think I'm doing a damn good job of it.

Looking For My Perfect 10

2011-10-01T14:49:00.000-07:00

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.

September Setbacks

2011-09-27T15:09:00.000-07:00

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.

On Thursday the 8th of September, the day after I returned to Visalia, I had my third PET scan which was intended to clear me to progress on to my Stem-Cell Transplant. The following Monday, Sept 12, I had my second bone marrow biopsy, which was scheduled with the same purposes. So nonchalant and un-preturbed did I feel that I'd actually laid there ass-up on the table singing I've Got You Babe to Annie while the doctor plunged for marrow.

Everything was going swimmingly until my Oncologist left the room to look up my PET scan results. When he returned, he placed a hand on my shoulder and said, "I'm sorry, but your PET scan results are not normal." What? "Your scan shows spots in your liver and spleen," he continued,"that weren't there in July."

Is it surprising to hear that this was just as shocking to me as being told I had cancer in the first place?

I had been so focused on my positive thinking and I'm-just-going-to-cruise-right-through-this attitude, it hadn't even occurred to me that there could be setbacks, not to mention a relapse. The conversation that followed was pretty short. He recommended to follow up with my doctors at Stanford. He said there was nothing I could have done to prevent this from happening. He also used the words "game-changer." That I understood.

The following week was perhaps the most harrowing I've experienced since beginning this cancer journey. There were no immediate answers, only vague clues as to what the answers might be. We didn't have any results yet about cancer in the blood or bone marrow. We didn't understand how it could have come back so quickly in my liver and spleen, a mere four weeks after my last chemo.

Existential Crisis Face

We did learn that, after one look at the PET report, the Stanford docs had decided to cancel the original October Stem Cell Transplant. We also learned that they planned to switch from an Autogolous transplant, where you use your own stem cells, to an Allogenic Transplant, where you use the stem cells of a donor. Without understanding the specifics of these decisions, it definitely felt like the ante was being upped somehow. Which left me and a few other members of my family to the Week of the Existential Crisis.

You see, up until this point, I'd never really confronted the reality of dying. When people would ask me if I thought about dying, I would say no and mean it. I told them I'd only think about dying when the medical people gave me a reason to think I should.

Now, it seemed, maybe that time had come. Not having kicked the cancer wham-bam as planned, I began to surmise that I might need to start coming to terms with the possibility that I might not be able to beat it in the end. I'm not trying to be dramatic. It just starts to look like a very fine line between "I won't think about dying, I only want to manifest positive energy!" and sheer denial.

So, I thought about it. And I cried about it. Cried to myself in the afternoon, cried at night with Annie, and cried in front of my parents over steak salads at Tahoe Joe's. I think it is healthy. I like to be prepared for things. Getting some grieving in ahead of time seemed to be a good a way as any to be prepared. Especially with only confusion as background noise.

I'd like to stress here that this is not a call for everyone else to freak out. I am not dying. I have learned a lot in the past two weeks about the state of my disease and the treatments being planned around it. I just want to make clear that uncertainty is emotionally difficult. And to share a great way I've learned to deal with it.
For obvious reasons, Annie and I have been seeing a Cancer Counselor (my title) since June. He is a wonderful, kind, insightful therapist who really helps us get grounded and take all this in stride. Anyway, in the Week of the Existential Crisis, he told us this story:

Once upon a time, there was a Chinese farmer. One day, the farmer inherited a fine horse, one of the finest-looking horses in the land.
"You are so lucky!" his neighbor said. "Your horse will bring you nothing but wealth and prosperity!"
"We'll see," said the farmer.
Soon after, his horse ran away.
"What a tragedy!" his neighbor said. "Your horse has vanished and without him your farm is sure to go to ruin!"
"We'll see," said the farmer.
Soon after, his horse came back, followed by five other horses as fine and powerful as he.
"What luck!" said the neighbor. "Now your farm is sure to be five times as successful as before, and you shall be one of the most prosperous farmers in the land!"
"We'll see," said the farmer.
Soon after, the farmer's son was training one of the new horses, and fell and broke his leg.
"What a tragedy!" said the farmer's neighbor. "Your son will forever be crippled, and he will never be able to maintain the farm as you have done."
"We'll see," said the farmer.
Soon after, the local warlord started summoning all the young men in the land, most likely to fight to the death in a war with a nearby kingdom.
"What luck!" said the neighbor.
And so it goes...

I think the point he was trying to make is pretty obvious. So now we are practicing not attaching too much emotional significance to every single turn of events. It's less exhausting that way.
Proceeding along those lines: The cancer is back. The prevailing theory is that only a portion of the population of the original cancer cells were affected by the initial chemotherapy. When my scans appeared clear in July, many of them had been killed off, but a smaller group was left to grow. That group is now being targeted by different, stronger chemotherapies, which I travel to Stanford to receive. An allogenic transplant is being prepared, which means I'll need a donor. (If you'd like to join the National Bone Marrow Registry, you could be the one for me!) Docs explain that an Allogenic transplant is preferable at this point because my own immune system isn't up to the task of fighting off mutant Cancer Cells. Hopefully, I can get someone else's cells that are.

As for Annie and my honeymoon, we spent an all-expenses paid week at the luxurious Stanford Hospital, in a shared room with a variety of roommates. At least she got an actual cot instead of a fold-out vinyl recliner! I also made some art courtesy of the bedside-art program:

I think I will save the details of the Hospital Honeymoon experience for a later post. I have plenty to say on the topic!
As for everything else, all I can say is, we shall see.

Marriage in Massachusetts

2011-09-20T14:08:00.000-07:00

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.

Our intention for the ceremony was to make it very personal to us and our relationship, without completely abandoning the traditional aspects of wedding ceremonies we still find meaningful. I believe we achieved this balance perfectly. We owe most of that success to Dennis LeBlanc, Annie's childhood minister. He's a soft-spoken man, but when he speaks, the combination of his speech and his presence is quietly captivating. The words he chose for our ceremony completely captured the essence of our relationship, from the things we have already experienced together to our shared visions for the future.

We chose to get married in a hayloft, which created some unusual aspects for the ceremony on a purely physical level. Since neither of us felt the need to be "given away" by our fathers, we had both sets of parents come down the aisle first, each stopping to light a thin tapered candle. Dennis came next and we followed him, hand in hand, through the crowd and up into the hayloft, to the sounds of "Everybody's Free" by Quindon Tarver. (Those of you who were teenagers in the mid '90s may recognize this song from the Claire Danes/Leo DiCaprio version of Romeo+Juliet. Don't judge us. It seemed appropriate on many levels.)

After having watched several episodes of TLC's bridal-competition show Four Weddings, I knew that one of the biggest obstacles in a wedding with no PA system is making sure all the guests can actually hear the ceremony. The hayloft was about ten feet or so above the ground, which was great for sight-lines, but I feared sound would be a problem. Dennis already had to compete with the noises of passing cars and the brook breaching its' banks at the edge of the yard. What if our loved ones had to watch us standing there mouthing words for half an hour, and never heard a thing?
Ever the calming presence, Dennis suggested he stand to the side of Annie and I during the ceremony—instead of in between us—so that he could be sure to project his voice loudly enough without bellowing into our ears.

Though the decision was made for practical considerations, I felt it was very symbolic that Annie and I ended up standing side by side during the ceremony. What a cool way to get married. Holding hands and smiling out at our families.

That was really the best thing about how the hayloft came together. Being elevated above the ground made it possible for the crowd to see everything happening between us, as well as for us to be able to make eye contact with all of them.

I think I will always be able to re-create in my memory that small semi-circle of people, staring up at us, sending us love.

Besides Dennis's own words, our we chose these readings to capture the spirit of our union: a Cherokee Prayer, Gift from the Sea by Anne Morrow Lindbergh, A Moment of Happiness by Rumi, and Ruth 1:16-17, (which is not only a bible verse but a Fried Green Tomatoes reference, and therefore doubly appropriate.)

After our readings, our vows—we each wrote our own "declaration of intention" and then recited traditional wedding vows—and the exchanging of rings, we proceeded down out of the hayloft back to ground level. There we used the individual candles our parents had lit to light one single candle, which represented our new union. (Dennis also made clear the symbolism of leaving our individual candles aflame, as we do not extinguish ourselves as individuals when we enter into a marriage. I liked that.)

We ended the ceremony with a blessing—The Northfield Benediction, a prayer from Annie's High School days—then the quintessential Marriage Proclamation (ours went "I now pronounce you Partners in Marriage," though we've since joked that Fart-ners in Marriage would probably be more appropriate. Ha-ha.) And then, of course, the kiss!

After that, 500 Miles by the Proclaimers started playing as the photographer scrambled up to the hayloft to get a big Group Shot of us with everyone.
We didn't think we needed anything so formal as a receiving line, so we ended up just mixing with the crowd, hugging everyone and posing for impromptu group photos (which I will post as soon as possible, I promise).
Many people had tears in their eyes as the ceremony concluded. I like to think they were simply tears of happiness, and that they weren't crying for the tragedy of Kia the Cancer Bride.

The rest of the evening was, as cliche as it sounds, a blur. Some of my most vivid memories include smiling so hard it hurt, Annie's fierce grin and the depth of her dimple, the taste of the fresh People's Pint ginger-ale, thinking all the food looked lovely but hardly eating a thing, my parents dressed in their best and looking incredibly happy—what a relief!—mopping rivers of sweat off my bald noggin so it wouldn't run into my eye makeup, watching Annie out-do me on the dance floor—she brought out moves I've never seen and had enough stamina to dance two dances for my every one—Dr. Dad fanning me with a paper plate during my dance breaks, and the palpable aura of joy and happiness radiating off of everyone present, including the caterer.
The intimacy of the event felt incredibly special, and I couldn't imagine having had a crowd three times that size to mingle with and attend to. That said, if I could change anything about the wedding, I would have loved to have more of my friends there with me to share the magic. We had to scale it back so much that there remained an incredibly long list of loved ones I would have been thrilled to celebrate with. Hopefully this blog, along with more photos and the video I'm going to post—as soon as I can!—will make everyone else feel as though they had been there with me. It really was one of the happiest, best days of my life.

Finally, to all of my new family in the Clarke clan, thank you so much again for working so hard to plan, decorate and execute the whole event, and rallying together to support Annie and me in such a vast variety of ways. I am so blessed to have become a part of your family. I cannot wait to be back there with you in body as well as spirit. I love you all so much!

Hurricane Irene—Bringing Out My Inner Bridezilla

2011-08-28T18:43:00.000-07:00

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.

Annie suggested I get on the phone with the airline and plead my case. What human being wouldn't be sympathetic to my situation? I know everyone feels like they should be the first ones back in the sky once it's safe to fly, but really, I do have a pretty great story. I am a Cancer Bride. This is the only week we can have the wedding because I have to be back in time for my Stem Cell Transplant. I have to be there three days before the wedding so we can get our Marriage License. This was not your average I-broke-my-nail Bridezilla meltdown.
Friday night after dinner I steeled myself for the inevitable on-hold music, plugged in my phone, set it to speakerphone and called the airline. After 45 minutes, I finally got a live person on the line. Literally 45 seconds later, the call got dropped. I stared at my phone in stunned silence. Then I called back. About twenty minutes into that hold-session, my phone's battery icon beeped. Apparently it can't handle over an hour on speakerphone, even while plugged in. So I took it off speaker and held it up to my ear. After 45 more minutes passed, I had to pee. I unplugged the phone. It died immediately.
By Saturday morning, Irene was moving up the coast of North Carolina, and I was moving closer to hysteria. By some magic twist of fate, when I called at 10 a.m. it only took me five minutes to get through. The woman was very kind and reassuring. No, they did not have a practice of "bumping" people. My flight hadn't been canceled yet. There was a good chance the it would not be canceled at all.

I relaxed a little, but was still apprehensive. In my mind, the hurricane had now become a cruel joke sent down from the heavens specifically to fuck with me and my wedding. After five long weeks, one of which was spent alone in the hospital receiving chemotherapy, the rest of which were mainly spent alone in my room with only the TV and my mom's dog for company, all I wanted to was see Annie. Enough was enough! Why did there have to be complications? I'd been so good, so patient. But this! This, it seemed, I could not handle.
Then, today (Sunday) things got even worse. Annie texted me intermittently throughout the day, reporting the damages as they progressed. Most of them were related to flooding. Her sister and nephews had to be evacuated from their home. Her aunt and cousin had to swim out of their house and climb to the top of a nearby hill. Her brother was stuck in his house, so high were the waters that surrounded it.
I'm ashamed to say that this last bit of news was the most disturbing to me, as her brother's yard is meant to be the site of both the wedding and the reception.
"Ben's yard can't flood!" I texted Annie, "we can't get married in a swamp!"
I know our wedding's not for another week, but who knows how long it takes for massive floodwaters to recede? For the lawn to fully dry? He lives right next to a creek, for crying out loud!
The few times I talked to Annie on the phone, she kept reminding me that the important thing was that everyone was safe and accounted for.
"Safe?!" I shrieked at her through my tears, "did anybody really think people were going to die just because their basement flooded? I mean, it's all well and good that everyone's safe, but what about our wedding?! "

I had officially reached my Low Point. Annie had some stern words for me, words that I myself might have once used, had I not morphed into a big fat scaly lizard-tongued Bridezilla. And, of course, she was right.
I do respect the seriousness of this storm, the lives it has taken, and the damage it has caused. I realize that I am, as ever, blessed. I will make it to Massachusetts, probably right on time. We will still get married, even if it's not in the place we had planned. We will still stand up in front of our friends and family and declare our love for one another, and that's all that really matters.
I can feel my claws retracting and my scales turning back into skin. Still, even though I have no airbrushed Bride t-shirt to wear, I plan to put on my sparkly silver Toms shoes on Monday and wear them every single day 'til the wedding. I don't care if they go with my clothes or not. It's my special week, do you hear me? Mine!!

The Bridezilla Herself, Test-Driving her Wedding Crown, Drawn-On Eyebrows and
False Eyelashes

Annie Left and I Took a New Lover—Television

2011-08-26T12:32:00.000-07:00

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

I can't take full credit for the first week. My last dose of chemo was stronger than all the ones prior, and I definitely felt more intense side effects. Mainly just incredible fatigue. And the mouth sores came back. Ouch.

So, every morning after Crossword & Coffee hour in the living room with the parents, I'd take a painkiller, crawl back into bed and just lay there, unable to even consider doing anything productive. Hour after hour, day after day passed me by, connected merely by one Food Network show after another. During the commercials, I'd close my eyes contentedly, happy to have a break from the heavy labor of keeping them open.

This past week, fully recovered from the chemo, I discovered I liked my new routine. The temperature outside hovers consistently around 100 degrees. Why would I go out there when I have a comfy nest, air conditioning and premium cable? Plus, we'd just recently switched to a new cable provider that makes it possible to record whatever shows I might otherwise have missed! Which I can then view at my leisure, fast-forwarding through all the commercials! (Having recovered from the need to rest my eyes every ten minutes, commercials are once again the tedious interruption they always were).

Do you know what a luxury it is to have complete control over the remote at all times?

Dr. Dad abhors television, but when he does deign to watch any he limits his viewing to documentaries about quantum physics and college lectures on the Berkeley Public Access channel (which, of course, our new cable provider doesn't carry. Boy, was he pissed when he found that out: "500 channels of TRASH and we don't even get the Berkeley Channel anymore?! What's the point of that!").

My mom's tastes, on the other hand, run more towards the Dr. Phil and Judge Judy type shows, which I cannot bear. She also has an affinity for Court TV—the Casey Anthony trial was a mainstay in our living room for months—and real-life crime-solving shows, which now have a whole channel devoted to them called Investigation Discovery.

"Mary Simmons was just an ordinary suburban mom...until the day she was discovered in her kitchen facedown in a pool of her own blood. Was the killer her husband? Or was she living a double life?"

I find these hour-long true-crime "documentaries" incredibly creepy and depressing, which I admit is an odd double standard, because I have been a huge fan of all the Law & Orders in the past.

To be fair, she doesn't always watch TV shows I disdain. We do occasionally come together on the couch for episodes of Dog Whisperer, Millionaire Matchmaker and LA Ink.

Most of the time, however, I prefer my own bed and the positive, light-hearted programming on the Food Network and HGTV, or any and every reality show that features creative competition.

Paula Deen, Guy Fieri, Bobby Flay, Alton Brown, Ina Garten, Giada DiLaurentiis— they are Food Network's biggest stars and most beloved chefs, not to mention my new best friends.

Then there's Iron Chef America and Chopped, both cooking-competition shows that feature chefs struggling to create fantastic dishes out of surprise ingredients, within a hideously short amount of time.

Chopped is my absolute favorite. Each episode starts with four different chefs, all on a mission to prove that they are the Greatest! Chef! in Brooklyn! (or wherever they come from). One chef is "chopped" after each course—appetizer, entree and desert—leaving the final chef standing to claim the $10,000 prize and the bragging rights of having bested their competition. Each round features a mystery basket of surprise ingredients, one of which is usually a common processed food that's utterly incongruous to the surrounding meat and vegetables. 20 minutes to create an appetizer out of octopus, maple syrup and Rice Krispies! 30 minutes to make an entree using roasted turkey leg, broccoli rabe, Ginger Snaps and Kalamata olives! 30 minutes for a dessert that must consist of bacon, carrots and Canellini beans! The combinations are endless and the Chef's meltdowns always entertaining. I only wish there were more episodes. Good thing Chopped Champions—where all the past winners come back and compete—starts next week.

This format—talented creative people tackling crazy challenges within intense time constraints—is used in many, many reality shows, and I watch them all faithfully. The only difference is that, unlike Chopped, most of these shows start with ten or fifteen people and eliminate someone each week until only one is left standing. America's Next Best Restaurant. Food Network Star. Top Chef. Top Chef All-Stars. Top Chef Just Desserts. The Great Food Truck Race. Project Runway. Design Star. HGTV's Next All-American Handyman. (I'm not even joking about that one, I can't wait for the upcoming season). I intentionally left America's Next Top Model off this list, because I can't get into it. I think it's because posing for different photo shoots is not a wacky enough creative challenge. I need fashion designers sewing dresses out of lettuce, pastry chefs catering a tea party without any chocolate, or interior designers remodeling an entire B&B in two days, using only repurposed furniture. These are the things that fascinate me. This is what my life has become.

I'm assuming that once Annie and I return from our Wedding Trip, I'll back off the TV time. There will be daily runs to Jamba Juice to make, and hopefully it'll cool off enough to have Yard Time again. Plus I will begin preparations for the Stem Cell transplant, which will involve lots of two and three-day trips to Stanford for tests, catheter implantations and other exciting procedures.

But the Big Question is, what will the TV situation in the hospital be like? And what about the rental apartment I have to stay in for two weeks as Bubble Boy? I bet in neither of those places is it possible to record Important Shows while one is otherwise occupied. Nor do I anticipate being able to fast forward the commercials. Sigh. It looks like I may have to start reading again. Or doing crossword puzzles.

In the meantime, however, I have last night's episode of Project Runway waiting for me. And I can't wait for it any longer.

Family, Norma and the Ultimate Gift

2011-08-09T14:58:00.000-07:00

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.

This was my first visit to her nursing home. The place, like so many of their ilk, smelled like urine and chemicals. There were grey-haired people parked in their wheelchairs in the foyer, noticing us and not noticing us. An occasional outburst of elderly indignation would drift down the halls every so often. However, the staff seemed genuinely friendly, and the floor treatment was a very nice, modern, reddish hard-wood. So much more uplifting than linoleum!
I did experience a ripple of surprise as I entered my grandmother's room and saw that she has evidently reached what must be the very brink of the end of her life. The only bits of her body she's able to move independently anymore are various parts of her face. We saw her mouth in action when Dr. Dad fed her a cup of yogurt. Her lips puckered out to receive each oncoming spoonful, even though her eyes didn't appear to register either the cup in his hand or our basic presence.
Her hands are locked into balled-up fists, and sometimes her nails get so long that they cut into her palms, so tightly is she clenched. My aunt tracked down some clippers to fix this problem, and as she worked her mothers' fingers apart, I saw some expression flicker across my grandmother's face. Her eyebrows furrowed and her nose wrinkled in what must have been either pain, frustration, or annoyance. Then, once we changed our clipping methods, her face relaxed into a blank slate once again.

It's hard to see her laying there, frozen, unable to interact with the people around her. But connection is still possible as long as we are willing to touch her. (And why wouldn't we be?) I had no fear of stroking her hair, petting her cheeks, gently massaging her shoulders, or even wiggling my index finger into her balled-up fist. This she held on to, like a little baby might, for quite some time.
I guess the sadness comes from her being unable to accept our love on the level of "normal" socialization. But touch works on an energetic level. I feel hopeful that, in whatever plane of life that she exists at the moment, she can receive our touch and feel some sort of relaxation and company. Really, I would have loved to have just curled up in her little hospital bed—so similar to mine!—except hers has inflatable pads to keep her shifting from side to side, which would make snuggling very awkward. Also it may have weirded other people out, I'm not sure.

And yet there is more to this story of my day spent witnessing life's inevitable decline.
My sixty-two year old uncle also lives in this nursing home. He suffers from advanced Parkinson's Disease, and is no longer able to care for himself on his own. He is wheelchair-bound, though I'm told he gets around in a walker too, and somehow had been playing basketball with the other residents before we arrived.
Relating to him is somewhat more complicated than it is with catatonic granny. He understands when people speak to him, but the muscles in his mouth and neck have been affected by his disease in a way that makes speech extremely difficult. Dr. Dad seems to understand him better in Farsi, so I mostly just listened to them talk and let Dr. Dad fill me in here and there on the relevant bits.
But how can I show him any familial love or support? We never had much of a relationship when I was younger and he was well. He developed Parkinsons when I was fourteen or so. So what do we do now? Talk about the weather? Do I tell him I'm sorry his life has turned out this way? Everything I can possibly think to say seems wrong somehow. Stroking of the hair and petting of the cheeks is clearly not appropriate in this instance. I tried just holding his eye contact and smiling benevolently, but he appeared kind of agitated by this, and why not? It felt kind of creepy to me, too.

Then there is the issue of Norma. Norma is my grandmother's roommate. Norma suffered a stroke seven years ago that rendered her speechless, though she remains bright and alert and very responsive when spoken to. She's clearly taken a fancy to Dr. Dad, enjoys the company of my aunt, and seemed to like me too.
She's also pretty mobile. She scoots around in her wheelchair, pedaling her feet on the floor to take her where she wants to go. She gets in and out of her bed by herself and seems pretty independent compared to many of the other folks in the place.
When you say something to Norma or ask her a question that makes her happy, her face lights up and she breaks into a big Cheshire Cat grin that's usually accompanied by a very happy-sounding "Aaaaaaaaaahhhhhhh!" Sometimes she'll take her good left hand, raise it in the air and wiggle her index finger at you, seeming to indicate that she likes what you've said and you've made her happy.
When Norma is displeased, it's like a giant thundercloud crosses her face. Her eyes grow dark, her forehead creases, her mouth turns down and her whole complexion changes in an expression of ultimate dissatisfaction. This expression is accompanied by a stream of "No no no no nononononooNONO!" or "Go go go gogogogo GO GO GO!"

The problem is, Norma has developed an unfortunate, intense, and obvious dislike of my Uncle. The only time I ever saw Mad Norma was when he was in the room. The rest of the time she was Mary Sunshine, glowing through her face, making lots of "Ahhhh" sounds, smiling at my grandmother and happily slurping the yogurt Dr. Dad shared with her.
Apparently her issues with my uncle stem from the fact that he can be very disruptive in his wheelchair. He scoots around very fast, and chips paint off the walls. I don't know if he has upset any of Norma's various personal effects in the room, but, well, the man has Parkinson's. The nature of his disease is to flail. All he wants to do is spend time with his mother. But the presence and personality of Norma—again, otherwise such a cheerful and playful spirit—appear to make this very difficult indeed. It seems like such a sad twist of fate. We all agree the staff should just make an exception to their rules and let my uncle and grandmother share a room to themselves. But as yet the staff has not budged from their policies.

When Dr. Dad and I left the nursing home, the sun was shining, slanting at a late-afternoon angle that illuminated the colors of the flowers along the road medians and gas-station planters. (He continues to be so impressed by the vivid red flowers "they have up there," but the truth is, we have the very same flowers in the valley where we live. It's just that the air is so much more polluted at home that they look drab and dull in comparison. That sucks.)
Anyway, back in the car, driving home with the glorious un-polluted sunset filling our car with clean, brilliant light, Dr. Dad seemed concerned that our time spent among these wacky, damaged invalids would be too depressing for me to handle on top of my own personal cancer. But it was not so.
On the contrary, I felt happy to have visited them after such a long absence. I'd rather see my grandmother at her most frail and feeble than not see her at all. Same for my uncle. Although his disease makes it hard to communicate, I feel like showing up and witnessing his life is still worthwhile somehow. I hope to make more visits to them while I'm in the area, before my procedure turns me into Bubble Boy and quarantines me to the hospital.

Finally, what does it feel like to have cancer—a possible death sentence, though we all know I don't really think of it that way—and be surrounded by people who are so much closer to death?
I don't know if this is a maudlin thing to say, but nothing makes you grateful for the blessings you still have than being reminded that there are people more "worse off" than you.
I have, as of yet, not lost a single one of my physical faculties. I feel tired sometimes, but never really feel sick. I've only experienced maybe a 7 on the 1-10 pain scale they make you use in the hospital, and that was brief. My mind is clear and I'm having spiritual epiphanies on a nearly daily basis. I walk the dog and breathe the air and take roadtrips and eat whatever I want and sleep 10 hours every night. I'm about to get married to the person I love.
Sure, I have difficult days. I experience some loneliness and boredom. I miss Annie. I miss my friends. I miss living in a town that isn't Visalia. My parents and I have struggled, and continue having to work very hard understand each other as a group of adults co-existing in the same space.
But overall, I can't shake the feeling that as long as my cancer or some complication thereof doesn't kill me—and I really don't think it will—then I have, in so many ways, been given a tremendous Gift. Having this awareness now can only enrich my life in every day to come, if I live to be 90 or beyond. Does it get any better than that?

Fear, Marriage and Separation

2011-07-31T08:36:00.000-07:00

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.

Annie had always been certain she wanted to get married. (In my opinion, her parents' relationship is pretty much the shining example of everything a marriage should be, which provided her with a strong incentive to want to get married herself.) Ever since I've known Annie, I've known that for her, the idea of marriage has always been something to look forward to, the ultimate prize, the pot of gold at the end of the rainbow.
Such was not the case for me. For most of my life, I'd thought of marriage as something to be approached with much trepidation. I'm sorry to throw my own parents under the bus, but based on the example I'd witnessed growing up, I'd been under the impression that marriage ultimately resulted in extreme dissatisfaction, constant disappointment and inevitable strife. And I didn't see any of my friends' parents making it look much better.
I just didn't know what kind of person I'd end up being. Maybe I'd go the traditional route and end up married with kids, but it certainly wasn't a given. Maybe I'd end up being ultra-bohemian and perpetually single—somehow the two went together—or maybe I'd find a life partner and we'd agree that officially getting married would ruin all the best things about our relationship.

And then I met Annie. I'd like to say that as soon as I met her, all the pieces fell into place and I suddenly felt sure that marriage=bliss, but it wasn't that easy to disassociate from all my previous notions.
It was about a year or so into our relationship that she started her subtle little campaign. We'd be going about our business, and she'd turn to me and say, "so, have you thought about marrying me today?" To which I would hem and haw and try to smile and say "yeahhhh," in a tiny little voice. This went on for several months. It wasn't every day, but with a regularity that made it clear that marrying me was what she wanted, and she was just giving me time to get used to the idea.
Then, in late September of last year, she Officially Proposed. I couldn't say I hadn't seen it coming, but on the day it happened, I wasn't expecting it. We were walking our dog along the dog path, and the sun was setting over the fields, and then she got all nervous, made a little speech, and pulled a ring out of Bella's doggy-backpack.
The right answer, I knew, was Yes. I loved her, I wanted to be with her and I certainly didn't want our relationship to end, so there was no considering saying No. But it still seemed so. incredibly. scary. I can't say what exactly I was scared of, only that it seemed like once I got married, there would be so much more to lose.
I continued to feel scared, even as months went by and wedding plans started being made. I was having a hard time making decisions about all the details, couldn't fully picture the event of our wedding actually taking place. I was terrified to admit it to Annie, but I wasn't sure I was ready.
And then: Cancer. Postponing the wedding made sense for all the aforementioned reasons, but there was also a part of me that was secretly glad to have been granted a little more time to acquire the necessary feelings of readiness.
(It would later be reassuring to learn that Annie did have her own share of fears about what our marriage would be like. Not doubts, she says, but fears.)

I re-proposed to Annie in a California Pizza Kitchen in Palo Alto. It was mid-June, the day of the Stem Cell Transplant meeting, one of the most miserable, overwhelming stressful days of this whole experience. My mom, Annie and I were sitting there, exhausted—Dr. Dad has always preferred exercise to food and had taken himself to a climbing gym instead—numbly going over all we'd learned that day.
With the possible transplant now a certainty, it felt even more important that we try to take a trip back to Massachusetts in late August, in the little window of time between my last round of chemo and the transplant. I wanted a vacation from all the treatments, and to see the friends and family I'd so abruptly had to abandon when I got sick. Happily, the doctors had tentatively granted their permission for me to travel. We were talking about the logistics of such a trip when a new idea struck me and I turned to Annie.
"We could just get married anyway," I suggested, smiling at her. "When we go back?"
"Ok!" she said, without hesitation.
My mom didn't realize I was serious, but as the words left my lips I knew I was. And suddenly the terrible day wasn't terrible anymore. Suddenly we had something wonderful and joyous to look forward to. And I wasn't scared at all.

Does it seem obvious that confronting cancer would make marriage feel less terrifying in comparison? Perhaps. But I don't think cancer would have done for every relationship what it did for ours, and I definitely don't want to give the impression that I'm doing it because I'm afraid I might die.
It's just the opposite. I plan to live a very long life, and the past four months have proved to me beyond any shred of doubt that Annie and I should live the rest of our lives together. I simply no longer fear that we might end up making each other miserable. Being on this journey side by side, facing every new challenge and twist of fate, loving each other and supporting each other, growing together and healing together, making each other laugh and having so much fucking fun together all the while, in spite of all the drama—there's just no way it gets any better than what we have. We are the lucky ones, I understand now. Fo Stage and No Stage for life.
Waiting for me to be "done" with cancer to officially merge our lives together had suddenly become absurd. We've clearly got the in-sickness-and-in-health part down. Why would we wait any longer?

And so the wedding plans re-commenced. With only two months to put it together, and everything ultimately being left up to the contingency that there are no Cancer Complications in the interim and I'm healthy enough to travel, the original plans had to be heavily revised. The guest list was pared down to immediate family, the venue shifted to her brothers' backyard, the ivory BCBG gown replaced by a white cotton summer dress from Banana Republic. (The first one, a size 4, was purchased in the sickly era of Mega Spleen. I can't zip it up anymore and nobody thinks its a good idea for me to try and diet back into it). Everything just seems like it's going to be smaller, and simpler, and I can picture it all perfectly.
Now, the only wedding issues I'm having are about abandoning any sense of vanity. Annie hates when I use the term "cancer bride," but there's no avoiding the fact that the chemo has taken its toll. I will be bald on my wedding day. My eyebrows, which have vanished, will be drawn on in the style of many of The Real Housewives of Millwood. My eyelashes will be fake, but hopefully natural-looking enough that I don't look like a drag queen.
It's not what most girls picture for themselves, but I'm determined to make the best of it. (The fact that I'm not one of those girls whose been picturing her wedding day since childhood probably helps. I don't have any princess fantasies I need to let go of.) I have, however, chosen a silver crown to adorn my baldness, based on the idea that it's better to give it Bling than to try and hide it. The dress, while not as fancy as the first one, is lovely and country-ish, and fully appropriate given that we're now getting married in a hayloft.

Annie left for Massachusetts on Tuesday. The plan was for her to surprise her family and join them for their annual lake-vacation in Vermont. It was supposed to be a ten-day trip, but as she was preparing to leave, several factors arose that made it seem like she should maybe just stay home all the way through to the wedding, which is Saturday, September 3. Her Massachusetts health insurance just came through, and she needs time to see some doctors for her own health and sanity. It's basically one of those situations where, in order for her to best take care of me through stem cell and beyond, she first has to be able to take the time to care for her own self too. If it has to happen back in Massachusetts, then so be it.
Then there is also the fact that her presence at home would be extremely useful to her family, especially her mother, who has so far been carrying all the wedding planning responsibilities on her own. Annie still hasn't decided for sure if she'll stay or not—we haven't been apart from each other for more than 2 weeks since we started dating—but missing each other now seems like just another brief hurdle for us to overcome.
It's quite a change to not have Annie by my side 24/7. The hardest part will probably be not having her to entertain me—and the rest of the nursing staff—during my last and final round of chemo. Without her constant companionship this next month, I will be forced on an even deeper level to find my own peace in the stillness.
Still, I know whatever inner battles arise in me during this time will be worth it. All the things Annie needs to take care of at home are going to make her a stronger, healthier, happier person, which will have the direct effect of making us an even stronger, healthier, happier couple. We will be a living example of the way that sometimes, being apart can bring you even closer together.

Round 5 Hospital Hijinks

2011-07-22T10:39:00.000-07:00

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!

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

2011-07-15T15:11:00.000-07:00

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!

2011-07-15T15:08:00.000-07:00

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.

Scott Morris arrived at Fresno Yosemite Air Terminal (airport code: FAT) on the evening of Thursday, June 23. Our downstairs neighbor from our old apartment on Prospect St. in Northampton, Scott is a beloved friend who came to camp with us before traveling up the coast—on a 24-hour train ride, at that—to visit his parents in Seattle.

The Super Trooper

We cruised up to Huntington Lake the next day in my favorite '90s vehicle, the Trooper. And by cruised, I mean chugged up the side of the mountain at a snail's pace—around 35 miles per hour. The car just would not go any faster. If we were in a cartoon, that poor old Troop would have eventually slowed to a stop on the side of the slope and flipped over backwards from sheer loss of momentum.
Both having grown up on the east coast, Annie and Scott were both suitably impressed by the landscape of the Central Sierra Nevada Mountains that was passing by out the Trooper's giant windows.
"I feel like we could be in Africa," Scott said early on in the drive, as we passed through dry, grass-covered foothills dotted with sprawling oaks. How crazy! I thought. To me, it's just home. To them, the Savannah.

"K-Bow" and "MacMo" on log over river at campsite

Our campsite was The Bomb, to put it simply. That we'd landed it at all appeared to be a move of Divine Intervention. The campground itself had been closed for the winter until that very day, snow having still been heavy on the ground until that last week of June. (See photo at left). Also, as we learned when we arrived to find an unfamiliar name stapled to the post at site 18, someone else had reserved the spot weeks ago but had cancelled at the last minute.
Basically, every single campsite in California had already been spoken for that weekend—I know because I googled most of them—but this one had somehow become Ours.

Fo Stage and No Stage with morning coffee. Yes, coffee.

The best feature by far was the giant river of snowmelt coursing along the far side of the campsite. Mid-afternoons, when the beach down at the lake became too crowded, we'd retreat back up to the campsite and relax by the river instead.
Late afternoons were a good time to sit by the river too. Annie and I both aren't drinking these days, and Scott had declared himself in need of a few days off from drinking himself. That in itself is no big deal, but there was still definitely a moment the first day where we all met eyes around the picnic table and said to ourselves, this is the time we would ordinarily all start drinking. I mean really, who goes camping without any alcohol?

Bridge over stream, at Huntington Lake

No six-pack of beer, no bottle of wine, no little flask of whiskey, no nothing? We do, that's who. And as that awkward, what-do-we-do-if-we're-not-drinking moment lingered, Annie suggested we each go pick a spot for the river and have a quiet moment to ourselves. A meditative moment, if we so desired. Of course, it was a lovely exercise that proved that mind-body stimulation is also capable through other means. Nature is a pretty cool thing to experience, after all.

On beach, with backpack chairs

Did I mention it was Annie's First Camping Trip? Lucky for me it went so well! She was basically charmed by every aspect of camping.
Staring into the blazing campfire long into the night, the sheer luminosity of the mountain stars, brewing coffee in a camp stove in the morning and finding a patch of sun to drink it in, the way all food tastes better when it's eaten off one's lap with a Swiss Army Knife—she was down with it all.
Another thing I think she experienced for the first time, or maybe at a new level, is the restorative power of nature. That energetic charge you get, being surrounded by woods or mountains or desert or sea, that feels like being plugged in and powered up by the Universe. It feels vital to me, with the cancer and all, to connect with this energy as frequently as possible. It does wonders for the spirit and, I'm sure, the body. I'm tremendously grateful this particular camping trip turned out to be the just the beginning.

As for MacMorris—as I like to call him—we bid him a fatigued but fulfilled farewell at the Amtrak Station in Hanford that Sunday afternoon. We had slept under the stars, shared a tent, snacked on the beach, shared our dreams around the campfire and drove around the lake with the windows down blaring Mexican Radio. It was the Ultimate Trip. Living the dream, as we like to say. And we made each other laugh the entire time.
We miss you, MacMorris! Come back and camp with us again.

Chapter Two: Independence Day

2011-07-15T15:07:00.001-07:00

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.

We threw our essentials in the rear of the Troop and headed to the hills. The morning was fresh, the day was ours, and the temperatures hadn't yet risen to the 100+ degrees that lay in store. The only problem was I didn't really know where I was taking her. I had only fleshed the plan through to the part where we found some accessible body of water, plopped the backpack chairs down alongside it, and chilled out to the max.

Instead we spent about two hours circling Lake Kaweah and it's environs, unable to find an accessible spot for foot traffic. There were plenty of places to launch a boat, but we had no watercraft. I eventually decided to point the Trooper east once more and drive up into Sequoia National Park, where I remembered a nice easy hike down to the river. I hoped it wouldn't be too crowded.

The Road to the River

It had gotten pretty hot by the time we pulled up to the trailhead. We strapped on the backpack chairs and headed jauntily down the path, so pleased to finally have parked the car and be headed toward an aquatic destination.

Not two minutes later, a giant rattlesnake slithered across the gravel path and into the tall grass to our left.

"Was that a RATTLESNAKE?!" Annie asked incredulously.

"Um, yep," I said, trying to be nonchalant. "Hear that rattle sound?"

I assumed our hike was over, but to my shock and awe, Annie was willing to continue.

"They don't really want to bother you," I tried to reassure her anyway, "they just don't like to be startled."

We reached the raging river a few more yards down the path. I could sense the coolness rising from it, and was aching to get out of the sun and into a shady patch where we could finally relax.

Fo Stage Admires the River

Then we saw the family of four up ahead of us, Mom+Dad+two little girls, stopped in their tracks, pointing to a patch of rocks to their left.

"Rattlesnake," the dad said grimly, as they started to head back. "Think it's a little too snakey out here for us."

Annie and I exchanged a loaded look. It was one thing to carry on blithely past one rattlesnake, but two? Two in under five minutes? That would be sheer stupidity, right?

"You have cancer and I have a bad ankles," Annie reminded me. "We're miles away from any hospital. We should probably turn back."

Dammit. I had to concede that she was right. I was wearing Crocs, for pete's sake. A rattler could easily sink its fangs in my ankle or any other place on my leg. We'd barely gotten started, but we turned around and headed back the way we'd come. Disappointed, I scanned the river for a snake-free resting place. Right where the trail turned away from the river and back toward the road, I saw a nice big sprawling oak making lots of shade over the rocks.

No Stage Plays on the Rocks

"Maybe we could just sit on the rocks over there for a little while?" I asked Annie, doubting she'd go for it. But again, she surprised me with her bravery. (This is a girl who used to hate the word "hike," has always preferred movies to mountains and will go into anaphylactic shock if she gets stung by a bee. Until very recently, nature has not been her thing.) And yet here she was, willing to lay around on some rocks with me on a mountainside infested with rattlesnakes.

Now. I do happen to know that rattlesnakes prefer sun to shade, and really won't strike you unless they're threatened or caught off guard. So I felt we were safe enough in the shade by the waters' edge. But it was one of those moments that makes you contemplate the nature of fear. Was it our fear that made us turn around, or common sense? This didn't seem to be the type of fear one tries to overcome. I was proud of us for being cautious and turning back, and proud a second time for being willing to stick it out and not call our adventure off completely. And so we frolicked for a nice long while by that river, happy as could be.

"Nubbins" Wets Her Kerchief in the Water

The second half of the day took us back down the mountain out of the National Park, to a July 4 cookout at the home of our friends Barbra and Molly. It was a small gathering of people, but it couldn't have been more perfect for us. We sat outside on their deck all afternoon, sweating in the shade, listening to Loretta Lynn and Dolly Parton, sipping Arnold Palmers and playing with their newborn baby, Nya. That day, for several hours, I actually forgot I had cancer.

By mid-afternoon, when the heat became unbearable, we tucked Nya into her stroller and made the 10-minute trek down to the river. The little swimming hole they frequent was actually roped off that day, due to unseasonably high waters and the sad fact that drowning is all too common when the snowmelt flows. Still, we all snuck under the rope and waded out as far as we dared, then took turns dunking in the water. It was so hot that day that we sat in the ice-cold river like it was bathwater. Plunging my whole body and naked head under the water felt like a baptism. It was fantastic.

Love by the River

The end of the afternoon brought the perfect July 4 dinner—juicy grilled chicken, fresh veggies and herbed potatoes. We watched the sun go down between the hills and the sky turn pink and purple. Exhausted from our unexpectedly long and adventuresome day, we bid our friends farewell, climbed into the Trooper, and started our journey home. As we followed the twisty road around Lake Kaweah, the sky turned a dusky peach, making a gorgeous reflection in the lake.

Then, as the last remnants of sunset faded into a dark blue sky and the road before us straightened out into the Valley, all the fireworks displays around the county started going off at once. It was like God had decided to give us our own personal show. We were incredulous. Neither of us could stop grinning for the rest of the drive. And the fireworks just kept on going—the entire way home.

Chapter Three: Backcountry

2011-07-15T15:07:00.000-07:00

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?

Right. Dr. Dad seemed happy that we were interested in joining him. He even upped the ante, suggesting that we drive an hour past Yosemite Valley, to another place he likes to climb called Tuolumne Meadows. But would there be a lake or a stream next to which we could unfold our backpack chairs and chill out to the max?
Yes, there would, he promised. He told us that Tenaya Lake would be more than suitable for our relaxation needs. (There is something about a body of water that is just more appropriate for hours of lounging than, say, the middle of a field. Even a very beautiful field.)
Also, a word about the backpack chairs. You may notice that they are featured in many of our outings. I cannot speak highly enough about this purchase. First, obviously, you can wear them like a backpack, which makes them incredibly easy to carry to lounging places off the beaten path. They also have a pouch on the back, making for easy storage and transportation of towels, water bottles, books, snacks, bug repellent, and more. They have a headrest. They have a cup holder. They are awesome. They take us places we've never been before. I'll never make another outing without 'em.

Sunrise over Highway 99

We got up just before sunrise (see photo) and hit the road. We were two and a half hours into the drive, sipping our soy lattes and rolling past the golden foothills that Dr. Dad refers to as "Steinbeck country" when I realized I'd forgotten my Neupogen shot for the day. And I'd forgotten to do one the day before. (Neupogen is the medicine they give me to increase white blood cell counts. I usually get a shot every day during my first week out of the hospital, and they're especially important on the days I'm neutropenic. Of course.) On weekdays I go to the cancer center to get my shots, but on Fridays they'll give me a couple to take home for the weekend. It's become a usual practice, and this is the first time I've ever forgotten to do it. My first instinct was not to say anything. We all know how serious Dr. Dad is about me not putting myself at risk for infection. How could I tell him I'd forgotten two days worth of infection-preventing shots?
"I just realized something, and nobody's going to like it," I announced. "I forgot to do my shot yesterday, and we didn't do it this morning either."
Dr. Dad almost turned the car around right then and there. Man, was he pissed.
"I should turn the car around," he said, "to teach you to be responsible."
That made me feel like a child, so I started to whine like one.
"Pleeeeaaaase, Dad, let's keep on going," I begged. "I'll be fine. I'll be fine! We'll do my shot tonight when we get home. It's only one day really missed. Please!"
He pulled over at a gas station so we could call my mom and get her opinion. Mercifully, I finagled her permission to continue, and so we did. I feared Dr. Dad would be angry at me all day long, but his spirits seemed to lift with the elevation.

Tenaya Lake turned out to be even more picturesque than we imagined. We arrived around 10 a.m., and found the little beach to be completely deserted. (Alas, it was not to remain that way, but we didn't realize it then).
We unfolded the backpack chairs and set them up facing the view you see here.
Dr. Dad took off to climb some rocks, and if he hadn't briefly returned with our lunch, we would have been so taken with the view we probably would never have noticed the doe that crept out of the forest to feed on some tufts of grass just behind the beach. She stayed near us for a remarkably long time—I guess the animals in the Yosemite area are pretty used to people at this point—but to see her was still a beautiful treat.

"I wouldn't be surprised if I saw a Unicorn right now," said Annie, after the deer had disappeared back into the woods. "Or one of those half-men, half-horse things."
"A centaur!" I cackled. But I secretly loved how enchanted she was. By everything.

Fo Stage in her Many Layers

You can see in this photo that I'm wearing a jacket. What you can't see is the sweatshirt, long-sleeved shirt and t-shirt I have under it. I'm not sure if you can see the knitted cap and the hoodie-hood underneath the windbreaker hood, but they're there too, as are the wool socks under my Crocs.
What you also can't see are the rest of the tourists, running around the beach in tank tops and shorts, wading in the water, and generally behaving like it's summertime.
Dr. Dad strikes again! There was a light breeze—or stiff wind, if you ask him—rolling off the lake, and he insisted I'd catch a cold if I didn't bundle up. After having dropped the ball on the Neupogen, I was in no position to argue. And so I spent the day layered like I was on an expedition to Everest, while all the children around me scampered around barefoot.

No Stage Surf-Dancing on the Beach

In spite of all the precautions and worry, we had a beautiful and health-problem free day on the lake that day. The only issue we encountered was the family of ten that swooped into our spot in the early afternoon. I guess it would have been smart to stake our claim at the picnic table nearby, but as it we had kept our cooler between our backpack chairs, there was no way to stop them from taking over. They swarmed around us like so many squirrels, and though we tried to co-exist with them at first, it became impossible to ignore the commotion of their many obnoxious teens. We finally ditched the beach and headed off to explore the rocky outcropping at the base of Dr. Dad's climb.
It was there that Annie saw her first marmot. It isn't a magical creature from a fantasy legend, and she did think it was a porcupine at first, but it was fun to introduce her to some new wildlife. Eventually she took a liking to the mountain rodent, and decided to call her Maude.

Fo Stage & Dr. Dad

I can't overstate how lucky I feel to be able to make all these trips to such beautiful places. I know that many people suffer so much from chemotherapy that road trips and mountain outings are simply impossible. For me, these trips are how I continue to Choose Life. They're what keep me going, what fills up my spirit-tank between hospital stays.
As much as I complain about living in Visalia, the saving grace of the place is that so many other gorgeous locations are accessible within a day's drive. I'm so grateful to be able to take advantage of this, and to suddenly have the time to show Annie the sights and places that make California so special.

Until our next adventure, Fo Stage and No Stage would like to continue to send love and thanks to everyone still keeping tabs on us, praying for us, and Choosing Life along with us.

The End. For now!

My New Birthday

2011-06-22T16:16:00.000-07:00

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:

1. Both my Stanford doctors and local Oncologist are in agreement that I don't have a "normal, run-of-the-mill lymphoma." Apparently, the fact that it bounced back after the first small dose of chemo makes all the medical people in my life quite nervous. (My local doctor just told me recently hat he's been hoping I'd be able to get the transplant ever since that moment in time.) The word they all like to use is aggressive. It seems my cancer is/was just too aggressive to sit around and wait for it to come out of remission. Even the specialists at Stanford don't see a case like mine—with a cancer that behaves this way—very often. This means that the tools they usually rely on to make these decisions ("caseloads of literature," to quote the Transplant Lady) just aren't available to them, and they have to go with their gut.

My local doctor also pointed out that first remission is the most opportune time to do this procedure—while the cancer cells are beaten back and my body is functioning healthily. If I were to wait for it to return, it's possible it might come back meaner and stronger, and be resistant to the chemo next time.

2. This part is really key: Even though it seems so encouraging that my scans have been coming back cancer-negative since the first heavy dose of chemo, those tests only show up positive when there are more than 1 billion cells present. One biiiiillllliiiiiooooon cells! Physically, that's a centimeter's worth of cancer cells.

I personally find it shocking that modern technology has not caught up to being able to detect, say, a thousand. Or less! And that there's no way to know if it's really gone. So that's what the doctors are saying without saying it: the chances of 100, or a thousand, or a million, or 999,999,999 cancer cells being leftover after the chemo is just too great.

3. So. Stem Cell Transplant. Or, technically, "High Dose Chemotherapy with Autologous Stem Cell Rescue."

There are two important words in that long name. One is autologous, which means that they will actually be using my own stem cells, vs. those of a donor. (This decreases the risk of "up-front mortality" from 20% to about 3%. It's just far easier and less risky to take one's own cells out of their body, tinker with them, and give them back, which is what's going to happen here.)

The second important word is rescue, meaning this procedure isn't even technically referred to as a transplant. (Again, they're not taking anything out of anyone else and putting it in me.) At one point one of the Stanford docs referred to it as a "glorified transfusion." He was trying to minimize the scariness of the procedure—nice try, Dr.Villalobos—but he's basically right.

4. So what the hell is going to happen, and how is it going to work?

Ok. So first, before I'm admitted to the hospital, they'll give me some more really heavy chemo. That chemo will continue to kill off whatever cancer cells are still lingering. Then I go home for a week and inject myself daily with shots that stimulate white-blood-cell count. White blood cells are born as stem cells, and these injections will force the production of so many stem cells that my bone marrow won't be able to contain them all. They will be pushed out into my bloodstream to await collection. That's phase 1. No biggie yet, right?

Phase 2 is the collection phase. I will go back to Stanford and they will connect my Hickman Catheter (to be inserted sometime at the beginning of all this) to a machine that draws the blood out of my body, spins out the stem-cells, and then gives me back my blood—and everything else in it. How sci-fi is that?

Phase 3 is the hardest part. Only then do they admit me to the hospital, because this is the time they will crank up the chemo so high—I think seven times the amount I'm currently getting in the hospital—that what remains of my immune system will die. The idea is to completely clean out the system and start from scratch. During that time, my stem-cells will have been living in a freezer somewhere. After that last week of chemo, they will put them back in my body through an IV drip, just like a blood transfusion. How weirdly simple.

The doctors call the day of stem-cell replacement my New Birthday. For about a week or so after my New Birthday, those stem cells should be settling in back at home and getting cozy in my bone marrow, ultimately repopulating my immune system and bloodstream with cancer-free cells!

5. That's basically all there is to it. The problem is that I can't just hop out of bed a week after my New Birthday and carry on with my life. It's going to take time for my body to build a new immune system. Of course, with a fledgling immune system, I'll be like a hermit crab or a snail without a shell. Completely vulnerable to viruses, bacteria, fungus and the like. So once released from the hospital, my crew (mom, dad, Annie) will have to take me to rented apartment in the Stanford Vicinity and treat me like the real Bubble Boy I'll be. (Section 6: Infection Prevention Measures is by far the most interesting part of that binder). There are millions of things I won't be able to eat. And plenty more things I won't be able to do, for varying lengths of time afterward. Among the most random: no flossing, no gardening, no golfing, no carpentry work, and no live Christmas trees (for six months after transplant).

For me, one of the most disheartening parts of all this is just the length of time it's going to demand. I had thought perhaps I'd be returning to Massachusetts—and some semblance of normal life—before Thanksgiving. Now it seems my New Birthday won't be until mid-October, and then there's the recovery, and at least three months worth of follow-up visits. That's pushing the CaliforniCancerCation into early 2012. I got here in March 2011. You do the math.

So I have seen down the path, and it's longer than I'd like it to be. It's like starting to solo half-dome and having the mountain grow another couple thousand feet while you're still clinging to the rock midway. I'm still not worried about falling off, I'm just not that jazzed about the climb.

My biggest obstacle continues to be day-to-day living. Boredom and ennui are my biggest enemies. And I'm not particularly looking forward to three more weeks of chemo without the help of my trusty friend THC. But I'll survive. One way or another. I'm sure of it.

The Third Lap Around the Ward

2011-06-10T11:00:00.000-07:00

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.

Fo Stage and No Stage Visit the Sea

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

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.

Perfect Timing

2011-05-30T18:14:00.000-07:00

Getting out of the hospital is great. But returning to the "normal life" of cancer patient on chemo-break is not as simple as it seems.
Once they removed my tubes last Saturday, so desperate was I to be free of the hospital I couldn't even wait for my parents to get to the room to pick me up. We grabbed our bags, fled to the building and loitered on a picnic bench in the parking lot until Dr. Dad arrived.
As the next few days passed, so glad was I to be back in circulation that found it much harder to carry on "as usual" and transition back into restful-healing mode. (Come to think of it, was I really ever in restful-healing mode before? Probably not.)
I began to understand that, ever since I'd been back home, I'd been very actively resisting any meaningful type of rest. No longer chained to the hospital bed, I couldn't seem to sit or lie still for more time than it took me to drink my morning tea.
I went to a movie, to mini golf, to a minor-league baseball game. I went out to dinner four times and out to lunch twice. I've been to gym every other day, and go to the doctor's office every afternoon for a shot. We do laps around the neighborhood and then I come home and do laps around the house. It occurred to me that I might be trying to outrun cancer.

I felt depressed, and it sucked to admit it. I was supposed to be Choose Life Bowman, weaving the threads of silver linings around me and reveling in the magic miracles that life continued to bestow. But the truth is, sometimes all that ever-present magic can still become heavily obscured. Like the brown smog that settles on the Visalian valley and renders the Sierra Nevada Mountains invisible from view, gloom can settle on a girl with cancer stuck in her parents house in her backwoods hometown.
Visalia was no longer felt like the peaceful abode it once had been. The house—stagnant. The town—dirty and downtrodden. The days—too long.

And so I was not to be at peace, and continued to drive myself crazy, creating errands and activities to keep me busy. The entire time, though, there was a nagging feeling that it is the wrong breed of busy. Like a cat trapped in a bag, I thought to myself—just struggling and flailing and fighting so hard against the one peaceful alternative, which would be to submit. Surrender. Sit down and stop running and relax in your fucking backyard! Take a nap! Anything!

It shouldn't come as a surprise to anyone, and I'm pretty sure I've written about it before, that this has been my biggest challenge for some time now, long before the cancer diagnosis. To learn how to drop all the activities and the productivity and be still and find peace in the stillness. It figures that it would take cancer to force me to learn this, and that I still wouldn't give up the struggling without a fight.
Just one blog ago I had the audacity to wonder aloud what my challenge was, and what my transformation was meant to be. Now here it was, slapping me in the face, and I found myself still trying to resist.

I was pondering this very juxtaposition when a Fed-Ex arrived. There had been an e-mail earlier from Stanford Doctor two weeks earlier about said package—that he had a patient with a very similar case to mine, who had beaten his cancer and wanted to send me the necklace he'd worn during his treatment.
I'd replied that those seem to be the kinds of things in life we should never say no to, and that I'd be happy to receive the necklace. Then I forgot about it. And then, on Wednesday , the Fed-Ex.

Was I literally curled up on my bed in the fetal position when it arrived? Yes, yes I was. Was I completely caught up in the tragedy of everything? Yes, I was. Was my soul quivering with the understanding of the heavy lifting it was going to have to undertake? Again, yes, but now might be a good time to remind ourselves of that Prednisone regimen, and also the Depo-Provera shot they gave me in the hospital to stop my periods (to avoid anemia). While I deeply believe in the spiritual journey this cancer trip is taking me on, I have to say that it is also possible that these drugs are fucking with my brain. The doctors are so intent on saving me from cancer that there is no discussion about the effects of hormonal birth control therapy and my mood, for example. But I know that going from 200mg of steroids a day to 20 is a big leap, and that some types of hormonal birth control methods can directly affect a person's state of mind. So. There is that to consider.

But back to the necklace. It is a clear crystal, wrapped by a thin wire onto a worn leather strap. It has a bit of weight. Along with it came a two-page handwritten letter, from the wife of my doctor's other patient. She told me the stone was found by his father, in the Ruby Mountains of Northeastern Nevada. She said that, as a healing crystal, it absorbs the good and bad energies around us, and releases only the positive energies. She said her husband wore it during his treatment and is now cancer-free. She didn't say how exactly they'd heard about me, only that I would also be a survivor. She also said this:
"There are times you will feel helpless or there is nothing you can do, that was the case with us. Exodus 14:14 says 'The Lord will fight for you, you only need to be still.' So lay back and relax as your body heals and fights this disease away."

It was a good day to receive such a message, and ended up being a turning point of sorts. I've worn the necklace every day since, and it is a constant reminder of that message and source of inspiration for me. I also look forward to the day I can pass it on to someone else.
Annie and I dog-sat this weekend, and, in the recliner of a neighbor I hardly know, I finally found many hours of peaceful stillness in front of the whole first season of Modern Family. I think I may need to have a recliner for myself one day.

Cribs: Hospital Style

2011-05-20T09:17:00.000-07:00

Annie and I got creative yesterday—peep my video episode of Cribs:Hospital Style here.
*Technical note- not sure why it's such a narrow window. Still figuring out this technology business. Enjoy the live action footage!

A Chemo Float in the Hospital Boat

2011-05-19T09:51:00.000-07:00

Fun with Annie's new iPad

This hospital stay has had a much more distinct "choose life-y" energy than the last one. As I imagined, coming in mentally stable and knowing what to expect has made it much easier to sit here and take this chemotherapy treatment without feeling like I'm losing my mind.

As for the chemo itself, I intentionally ignore the bright green biohazard sticker on the bag and try not to dwell on the reality of what it is—liters and liters of absurdly toxic bright-orange chemicals saturating my entire body over a four-day span.
I mean, it's obviously what I'm here for. I'm not sick in any other way, I'm not in any pain, so my sole mission here is really just to entertain myself while it drip-drip-drips its' way in. But in terms of healing, I just have to think of it as a necessary measure to becoming un-cancered. It also helps to stage the chemo-environment with some undersea creatures (see photo).

Lobster Puppet sent by Ken Bowman,
Jellyfish crocheted by Amanda-Jean Ward

I also brought in quite the load of other items that seem to boost the Essence-of-Kia in this small, bland, dark little space. Photos of myself in stronger moments, photos of friends I wish to keep the closest, a giant poster with a drawing of a screw with the word CANCER in bold red type beneath it, the quilt Annie's mom gave us for Christmas, my own pillow with the butterfly pillowcase, and of course, Annie (see photo below).

Basically the only real obstacle this time around has been my neighbor to the left. We call him Jerry. Jerry screams in pain, he begs to die, he moans and hollers at all times of day and night. When we try to politely inquire to the hospital staff if he's ok, they all kind of roll their eyes and say that the people who put on these kinds of theatrics are usually the ones furthest from actual death. It's still a bit unsettling, to say the least. I don't mean to be all sassy-bitchy about other people's suffering...I just wish someone would give the man something to make him sleep it off! Then I could get on with my ignoring I'm in a hospital and continue pretending I'm just traveling below decks on a really tiny boat.

Annie wins!
Here she is in my view from the bed.

Also, there are a few other elements conspiring to make this time around feel so much more upbeat, for lack of a better word. The first is prednisone. These are the same steroids they had me on last time, but instead of sending me scrambling around the room on an OCD bender, this time I am just staying really conscious about how much they boost my energy level. It's strange, yes, to feel energetic while being attached to a bag on a pole by liquid tubes that flow into a catheter embedded in your chest. No question. And yet, right now I feel like I could sit here in this bed and do some sit ups. Or bicep curls. Or jump off the bed and do some squats. I've managed to curb the athletic regimen to some light stretching, but it sure is strange to be curled up in this stiff little bed at night, unable to sleep because there is this current of sort of happy energy buzzing through me. (Or could that be something else?) Oh, Prednisone. Someone remind me to comment on how I feel once I go down from the hospital-sized 100mg dose to the 20mg I get at home.

Another major boost to my energies has been the "special" cookies I smuggled in with me—though it's not really smuggling if nobody cares, which I'm pretty sure nobody does—made by the loving and generous hands of two very special sets of friends. They boost my appetite incredibly, helping me to eat right through the chemo, which was very difficult the last time. Also, I have to say they just make the days funnier and generally more pleasant. I feel really grateful to have received them in time for this hospital stay. Probably the best medicine I'm getting in here. Viva los edibles!

Speaking of appetite—
my last meal before the hospital. Yum yum!

And yet, through all the special cookies, the Prednisone and Jerry's ranting, I have found a little time for quiet contemplation. Here's what's on my mind:

Every time I peer into Facebook, I am slapped in the face by all the fun things my friends are doing that I am not currently able to enjoy. Vacations to Mexico, outdoor cocktails, bike rides in the spring greenery, you name it, I'm not doing it. Can't do it. For several more months at least.
But, every so often I'll see someone buckling under some kind of stress or responsibility that I'm also not having to deal with at the moment, that used to weigh so heavily on me before. Washing dishes. Sweeping up dog hair. Trying to keep myself fed every day on an incredibly tight budget. Going to the laundromat. Washing more dishes. Changing the oil in my car. All those un-sexy, un-fun adult responsibilities that I carped about so often are completely swept under the rug right now as I continue to just be a Cancer Patient. And, in some way, I'm lucky to have a break from all that. Who wouldn't enjoy the chance, on some level, to be free of all their usual responsibilities, for several months on end?
Of course, the conclusion I'm coming to about all those pesky adult responsibilities is that they are totally worth the fun-time, spring-time, summer-time, time-off activities you get to do alongside them, generally whenever you please. All that dog-hair, laundry, dishwashing bullshit is the price we pay for those ultimate freedoms. Don't take them for granted. Go ride your bike!

Taken at the Sequoia Mall,
Saturday, May 14

Lastly, my friend Elise sent me a book I've been devouring—one of the few books I've been able to stick with lately—called Broken Open: How Difficult Times Can Help us Grow, by Elizabeth Lesser.
I've found it to be tremendously relevant and meaningful as I go through this. The main nugget is to use challenging times —big or small—to expand yourself into a more soulful, conscious person. To be able to be the phoenix rising from the ashes of your own personal tragedies, whatever they may be. I'm loving her voice, her own story, and the stories from other people that she shares.
It just makes me wonder: how to put that into practice myself, in the midst of my own so-called tragedy? What am I holding on to that I can now let go of in the ashes of this Cancer fiasco? Who is that person around the corner that I'm just waiting to become? And how on earth do I make that actual transformation? I feel so on the brink of that blossoming.

Rebound!

2011-05-14T15:16:00.000-07:00

If my cancer journey is like Lord of the Rings—or any epic movie, really, where many battles are waged—then this past week has been that tranquil time between battle sequences when the sun comes back out, the heroes shower off the filth and grime of war, and small bits of merriment occur.

The pendulum did seem to have swung in the direction of the awful there for a while. That first week out of the hospital was largely characterized by stress and discomfort. The stress part I covered in the last post, I believe, but the discomfort of the chemo I had tried not to mention.

However, now that I'm not currently suffering, it seems worth describing.

It did end up making me feel pretty miserable, but not in the way I expected. It's not a I'm running to the toilet every 10 minutes with the stomach flu kind of sick, as much as an all these extremely uncomfortable things are happening in my body at once kind of sick. So much for the "feeling bad because of chemo is a self-fulfilling prophecy," idea.

One of the worst side effects was developing Thrush, an oral yeast infection that occurs most often in babies but apparently also can happen as a result of taking lots of steroids. You get white patches all over your mouth, tongue and throat that not only look nasty but feel like the open sores that they are. It makes chewing and swallowing a cruel and unusual punishment.

Then there was also the fatigue, both extremes of the bowel spectrum, nausea, bone pain and rigid muscles in my back that made me squirm and flail like an upside-down beetle whenever I laid in bed to go to sleep. Overall, a layered combination of unpleasantness from which there was no escape but time.

Luckily the time passed pretty fast, relatively speaking. By the beginning of this week, most of my side effects had dissipated. On Tuesday, I was mostly just coasting on fumes of emotional exhaustion when we got a call from my Stanford Doctor, letting us know that their lab actually hadn't run one of the Very Important Blood Tests they needed, and could I please come back so they could get another blood sample?

The news almost broke me (and Annie) when we first heard it delivered from Barb's anxious lips. Another harried trip to Stanford, full parental panic signals blaring, this time under the disturbing auspices that the professionals there failed to do the job right the first time? Nooooooo!!!!! Say it aint so!!!!

Yet fate decided to pee down a little golden shower of good luck upon us that day. Nicholas Benitez—one of my best friends since High School—happened to be standing in the kitchen when we got the news and volunteered to drive us himself. God bless you Nicholas, and the Nissan Cube you rode in on!

This trip to Stanford was terrific. Annie, Nick, Kia, and the Cube proved to be a recipe for travel success. Relying only on our iPhones to guide us, with Hotel Zico on El Camino Real as our home base, we navigated to and from downtown and the Cancer Center with ease. We watched basketball in a bar and ate pizza by the slice. We ate snickers bars in bed in our hotel room while watching back to back episodes of HGTV. We spent less than 45 minutes in the Cancer Center the whole time. Having it feel more like a roadtrip than a Cancer Mission was far and away the greatest thing. A glorious and necessary break from everything that had come before.

A couple things about the second trip to Stanford:

When I arrived there, back at the lab, they still didn't have the right test ordered for me. Luckily I had the presence of mind to ask the woman as I was checking in what tests had been ordered in the first place. She read back the most common test, the very same blood test I get done on a weekly basis in my local doctor's office.

"No Flow-Cytometry?" I asked, shocked that I'd driven four hours the day before and they still weren't about to get the right test.

"No," she said, smiling up at me, "Just the CBC. I'll have to call and check about that."

So much for the idea that the Stanford Cancer Center, with all of it's polished interior decor and live harpists strumming in the hallways, can't fuck things up just as bad as a small-town cancer clinic.

I called my doctor on his cell phone and cranked up the indignation in my voice—or imagined I did, anyway—as I let him know that there I was, standing in his lab, and they were about to give me the wrong test. Again.

He reacted with appropriate concern and rushed off the phone to fix the error. I know he must have given the lab staff a verbal bitch-slapping, because they all got real peevish with me from there on out, as if it was my fault somebody got called out on not doing their job right. Whatever. They took my blood, I made sure it was going to the right place, and I was Out. Of. There. In enough time to still get free parking, too!

Now, before we all get carried away on a silly wave of hate and frustration, let's just focus on the good news: that second set of test results I went all the way back for came back very positive, which is to say, no cancer cells were shown lurking around in my blood. None at all! This confirmed what the miserable PET scan had also indicated. That the cancer levels left in my body are so low, they're not even showing up on most tests!

Of course, this doesn't mean I'm cured yet. We know from the diagnosis and the past behavior of the cancer—mainly, it surging back after that first wee round of chemo—that it is an agressive lymphoma. So even though there aren't hordes of these cells swirling around throughout my body anymore, all it takes is one or two to be left behind and sooner or later they'd regain numbers and take back over. Still, it's a great comfort to know that the treatment is working as intended. That my spleen and liver are still the size they ought to be. That things are, for the moment, going well.

This is just the sort of necessary inspiration I need, as I'm set to go back into the hospital for more chemo on Monday. It would be absurd to say that I'm looking forward to it, but there is a part of me—the part that's feeling better, obviously—rallying up a bring it on attitude. I survived the last round, and it fried the shit out of all that cancer. I handled it once, and I can handle it again. It looks like they won't be increasing the dosage yet (there's still 4 more rounds after this, and I'm told it will get stronger) so I pretty much know what's coming.

I'm also banking on the fact that I'll be going into the hospital for a 5-day chemo course with sound mind and body. I fully believe having my wits about me at the beginning will improve my experience this time around. The whole calcium-dementia scene was so disconcerting and alarming, I think it carried into the overwhelming confusion I felt during that whole round of treatment. This time, I feel prepared.

Annie and I also prepped by writing down a list of goals to keep me sane while in the hospital. They include helpful ideas like showering at least three times that week, getting dressed every morning, and leaving the room once a day. It's all about the routine.

And again, before I get swallowed up by another Chemo Trip and whatever is to come from that, I wish to send love and gratitude back to the people everywhere who are supporting me and my family through this crazy journey. I have received so many funny, thoughtful and precious words and tokens from a circle that is wider than I ever knew, and seems to keep subtly expanding. I was striving for hand-written thank you notes, but am finding that I can't even keep up with the flow of letters, toys, crossword puzzles, crazy hats, and everything else people have sent to show their support. I am so blessed to have every one of you in my life, and to be on the receiving end of all this goodness.

Thank you!

The Good, the Bad and the Roadtrip

2011-05-04T09:44:00.000-07:00

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.

What did you do this week?

2011-04-26T07:34:00.000-07:00

It seems weirdly fitting that I've been working on the same post for a nearly a week and I arrive this morning to a blank slate. Good thing I've just had a nice tall tab of Ativan and it's not yet 6 am - I am having no negative reactions to the change.

I will try a new angle and take you on a trip through the past week:

Thursday: Receive blood transfusion. It is easy. It takes about five hours. I eat a turkey sandwich in the middle of the treatment, then fall back asleep. Expect to feel fully refreshed the next day.

Friday/Saturday: Come dangerously close to having first Exorcist moment. Stop making sense when speaking. Sleep alot. Cry a lot. Feel sick, make self throw up most recent meal—prunes and peanut butter. Smoke lots of weed, yet for the first time it does not induce immediate hunger. Annie returns.

Sunday: Vomit chamomile tea in morning without provocation. Barb calls doctor. Am brought to see doctor. Doctor assesses the situation. He asks questions like "How much did you eat yesterday?" and I say "I ate one mile." He says, "What was your lowest weight?" and I say "220." He sends me to hospital, where I am admitted.

Monday: Continue speaking like possessed creature. Tell mother I can't possibly shower "with that hat in the toilet." (the pee-capturing hat.) It does make sense, just sounds ridiculous.

They have held me without food or water from midnight Monday morning 'til noon, so they can do a mini-operation in which they implant a something called a port-a-catheter in my chest above my heart. This a handy device through which all blood and other fluids—including chemo chemicals—can be given and extracted. Saves a lot of wear and tear on the old arm veins.

Still all fluids are withheld through noon on Monday and all I can do is babble about gatorade. It's all I'll talk about, to anyone who'll listen. Any member of the hospital staff, including the orderlies who wheel me from place to place, hear about my lust for Gatorade. One yellow, one orange, and one purple. As soon as I come back from under the anesthesia.

Tuesday: I am full of Gatorade. The port is locked and loaded in my chest. I'm acting half as batty as I did when I arrived. It turns out the reason for my lurch in behavior was a spike in my calcium level (of all things). Apparently, when your calcium levels go up 5 Mls per decibel (or whatever) it makes you crrrrraaazy. So they gave me some anti-calcium stuff and I become me again. Only this me is on steroids, and here's what that looks like:

I wake up Tuesday before dawn, looking for my cell phone so I can transfer my photos onto my computer and start a blog post. Unable to find cell phone, I ransack both Annie and my luggage, crawling around behind her bed on my hands and knees on the (not-so-clean) hospital floor. I fold and re-pack all of our clothes. I call my parents at 6:30 am asking have they seen the phone. They have not.

I "accidentally" wake up Annie, who tells me where to find the phone. I start a blog post. It goes unfinished, for reasons I can no longer remember. I spend the day in complete OCD mode, trying to re-organize everything in the room. But nobody wants me to bend or lift, as falling or bruising or breaking could apparently be tragic. Nobody wants me to do anything but sit in bed and direct traffic, which kills me.

Annie and I fight over things like whether or not I can get into my red bag and look for my own socks. I get up to pee and then lurch around tidying things, justifying myself by saying "well, I already had to get up to pee..."

Tuesday evening culminates in epic breakdown, witnessed by Dr. Dad. He has come with some bottled water which Night Nurse T. claims the hospital does not supply after 6 p.m. I have developed some issues with Night Nurse T. It's not that I think he's bad at his job, it's just that I don't entirely trust him to empty my pee hat or bring him the extra sheets I'll need when I sweat through the night, or remember what medicines I'm supposed to take at which time, or understand what the hell to do with me in general. The last time Night Nurse T. left my room, in fact, I had said to him, "Oh good, this means I won't have to see you again 'til midnight," after which I had felt terrible.

So Dr.Dad arrives in the middle of this scene and says, essentially, "Good God, you're hysterical, why don't you just page the nurse and ask for an Ativan?" And I sob and explain that I can't possibly face Night Nurse T. again, not after what I said to him and how I feel about him. And I cry and cry, and Dr. Dad goes and gets Night Nurse T., who comes back with an Ativan looking all hangdog and apologetic but still doesn't empty the pee hat or bring the extra sheets.

Wednesday: Am forced to draw from previous night's experience and tell oncologist about encounter with Night Nurse T. This is extra difficult as I'm extra self-aware that every time I speak, I seem to go on about three times as long as necessary. People keep turning to me and gently urging me to simplify. I think I am being simple.

So the simple issue is, I'm a control freak with some new anger management problems. I hate being stuck to a 10-foot radius surrounding my bed. I hate that if I break that 10-foot radius, something bloody will rip out of my chest or something expensive will rip out of the wall. I hate not being able to go outside. I hate not being able to leave 3 south. I hate having to ask Annie to get my socks out of my red bag. I hate having to ask people to do anything for me. I really, really, really hate the nurse-call button. I hate being at their mercy. I hate not knowing if they got the beep, and the annoyed sound in their voice when they do. I hate that the chemo-drip machine gets air in the line every 20 minutes and beeps incessantly until someone will fix it, and the only way to get someone to fix it is to press the nurse-call button.

I do like all the nurses, though, except Night Nurse T. And I love my parents. And Annie. But this is not the segment for that.

So the resolution to the epic breakdown is to get on a lower dose of steriods, and a regular schedule of Ativan, and have a very nice student nurse named Kelly hand-write me a copy of her color-coded notes which tell me exactly what medicines I need to take, what for, and at which times per day. This turns out to be all I really require.

Thursday: Continue to make way through 2nd liter of Orange-Slice-Colored chemo bag. (I'd say Orange Gatorade, but I love it too much). This is now something like day 2-or-3 of 4-day long chemo drip marathon. I don't especially try to keep track of the days. Oncologist has arrived at a plan where I finish this chemo, hang out a week or so at home—how I LONG for some Yard Time now! —and then drive up to have a consultation with the Stanford People. This here cancer, it seems, might be more aggressive then they initially thought, and require some measures that Kaweah Delta District Hospital cannot provide, such as a Stem Cell Transplant.

I'm not yet informed enough to spread statistics about Stem Cell Transplant as a therapy for Acute Diffuse B-Cell Lymphoma, but I know they're considering it. I also know they use your OWN stem cells to grow healthier ones, or something, so no donations will be necessary.

Anyway, spent Thursday morning in good spirits which somewhere around 2pm gave way to poor spirits which involved me curling up in the fetal position and crying in Annie's lap, so she put some pants on me and took me out onto the Patio, the only place outdoors I'm allowed to go. The Patio is a pretty terrible place, but I won't describe it here because we fooled around and took some pictures, which Annie then got tipsy and edited into a video. Am hoping the video makes it to this blog very shortly.

Friday: Spent the entire day watching Inglorious Basterds in bed. Had many local visitors (parents + friends of parents) which made it possible to watch a 2.25 hour movie in 6 hours. Had no appetite. Slurped on Ginger Ale. Spent many hours regretting having put on Old Spice Deodorant—think I'll never want to smell it again. On the plus side, received Tremendously Terrific Care Packages from Tremendously Terrific Friends, which I could do nothing but sob over. Friends! Sob! I miss you!

Saturday: (This present moment!) 7:07 am: Dr. Fill-In Oncologist has just declared that this is to be my last bag of Orange Chemo Junk (I think there were four in total). That will be followed by a much smaller bag of Cytoxin (fun name, right?) which will empty itself into my veins and that by tomorrow...if all my blood work looks good...I can go HOME! But I can't bear to set myself up for disappointment. Who knows what the blood work will look like? How can I predict the capricious nature of my hemoglobin, calcium, white blood cells, LDH levels, and what the fuck else? I can not.

Also, I am bald now. Like, down to the nubbins, bald. It fell out as soon as I shaved it off. I look in the mirror and I see Gollum.

A Bloody Decision

2011-04-19T17:48:00.000-07:00

I went in for my weekly blood test today. Until today, it's been very hello-how-are-you, fine-good-no-complaints, great-keep-it-up! And it would end. But today, Delsey, the woman who takes my blood and goes over the results with me, had some more interesting feedback.

She explained that my hemoglobin levels have gotten lower since last week. (And the week before.) She said at this point, with my level at 8.7—normal is 12.5-16.5—she could authorize a blood transfusion.

Blood transfusions sound scary, but I think there is still a lot of mental backlash in people's minds leftover from the '80s. My understanding is that procedures have been improved to the extent that doctors can pretty much guarantee there's no leftover Hepatitis or HIV floating around in there.

Yes, of course, there are always risks. My dad told me about a patient who swore that after her blood transfusion she became allergic to avocados and horses, or something like that. Definitely the avocados. So who knows what little wacky thing could happen to me?

I've chosen to do it because my short-term goal is to be in the best possible shape I can be for my next chemo treatment (a week from today, next tuesday) and I think I will most likely stand a much better chance if my blood levels are stronger and I'm not super sick and anemic. The transfusion is this Thursday, so I'll have the four days before the chemo to balance out.

I can sense the drop in HGB (hemoglobin) pretty intuitively. I do feel more fatigued, more winded, several levels less energized. In fact, my whole experience over the past week has been that since last tuesday, when the first round of chemo peaked in my body, I've been aware of some more "cancery" feelings creeping back in. I got some gnarly hives on my legs twice in the middle of the night this week (see ugly photo below), have been running that low grade fever, and then sweating like crazy every time it breaks.

All of these things, I think probably including the drop in my HGB levels, tell me that the cancer is in some way holding a little more sway, and isn't currently being run off like a cat with a water gun, which is what I'd like.

The other thing that has to be considered is that if I weren't to do the transfusion, we would be gambling that my blood levels would be high enough to the full dose of chemo next week. If the levels stay this low or get lower, it is likely that they would have to reduce the dose a second time—and that is not my purpose.

My purpose is to be here getting chemo and thus getting cured from cancer. There's no other way to say it. So if a blood transfusion, a simple preventative measure, is what it takes to get more chemo and less cancer, then I'm all about it.

(Thigh Hives! Not for the faint of heart.)

Fo' Stage gets a Haircut

2011-04-18T21:10:00.000-07:00

Annie went back home to Massachusetts yesterday. Take care of business, see the fam, that sort of thing. I'd told her I wouldn't do the big head shave until she got back Saturday, but it turns out it had to happen today.

Nick and I were out front having Yard Time when I turned to look down at the pillow I'd been laying on. It looked like there were a few too many extra hairs lying there. I ran my fingers through my hair and came back with, again, a few too many. No clumps, thank God, but enough to send me running for the clippers.

Since I've had my head shaved before—see blog entry Diagnosis—this was not a traumatizing experience for me. I actually quite like the way it feels to have air touching my scalp.

After the shave, we went rummaging around in my mom's old silk scarves to prepare for my future role in cancer fashion.

Nick turned out to be a very sophisticated stylist—I'd expect nothing less, really—and told me if I practice my scarfing for 15 minutes a day "until I really need it," I'll be a classy Old Hollywood scarf-wearing beauty in no time. I love that man.

In other news, my oncologist has freed me from the bacon diet. Well, as much as I want to be freed. He said that any weight over 120 was perfectly healthy (I think I'm almost to 127 now) and that he wouldn't start worrying until I get to less than 110. Less than 110! That hardly seems possible. So, I can ease off that fast-food bender I never actually went on, and be comfortable knowing my body is in an ok place.

I still stuff myself more than is comfortable most days, just knowing I'm going to need any extra layers I can get, but at least the Vigilant Hamburger isn't coming after me anymore.

I've also got the good graces of the oncologist to join the cancer wellness program at the local gym! The "program" is actually sort of a joke, as they don't have any special classes or specialized trainers to work with cancer patients, but I do get a free membership with my doctor's recommendation.

I met with a trainer who sees all new members, and he helped me pick out a strength-training routine I can do whenever I feel well enough.

After all this intensely focused eating, I have the urge to do more than just accumulate new fat around my middle. I can tell that I've lost so much strength and muscle mass already. Honestly, my ass is just like two little flaps in the breeze. I would love it if all this energy I'm taking in could be spread throughout my body and put to good use. If, at the very least, I could maintain this level of muscle mass, or something close to it, I'd be very happy. I'd hate to crawl out in October with no flesh on my bones and then say, "hmm, looks like it's time to get down to the gym!"

Plus Annie has also joined the gym and it's so much more fun to go with a buddy.

And, now that I have my head shaved, I'm going to look really badass when I'm working out there. Really GI Jane. Hopefully nobody will notice I'm struggling to pull down 10-lb weights on the machines!

(Bonus old photo of Nick and I, both in the hotness of our early twenties. I'm bald, we're both fabulous!)

The Real Housewives of Millwood

2011-04-14T09:42:00.000-07:00

This photo here is a map (not to scale) of Millwood, where we live. It is not a gated community—yet. Would a gate at the single point of entry and exit to the neighborhood perhaps help boost the severely diminished property values of our outmoded '80s-designed suburban enclave? Some think it might.

Gate or no gate, it was a pretty quiet, safe place to be a kid. It is now a pretty quiet, safe place to be a cancer patient. And we are getting to know the neighborhood on a very intimate level.

We walk around Millwood at least once a day (see route in photo). Many times twice. Aside from needing some activity to digest the mass quantities of food I've been stuffing into my body the past week, it's really about the need for a change of scene. To be out of the house. To be going to point B from point A, even if point B really is point A to begin with.

(Annie has never lived in Suburbia before. For her, each trip around the loop makes her feel like she's living in an episode of Curb Your Enthusiasm. It has something to do with the landscaping. She keeps saying she needs to watch it again now that she lives in California. That she's going to see it through a whole new set of eyes.)

I feel I know what the other Millwoodians must be thinking. There go those two girls, pacing through the neighborhood again. Where did they come from? Who are they? Are they smoking weed? And then we disappear, around the corner at the end of the block, only to be seen again the next day, in the same outfits...

When we're not rollin' through the streets at a slow pimp pace, we bring beach towels onto the front lawn and have what we call "yard time." Sometimes we read, sometimes we nap, one time we listened to Abbey Road, but mostly we just sprawl around and chitchat with our new friends, the Ladies of the Cul de Sac.

Living in the house to our left is Wilma. She and Annie hit it off big time last year when she and her husband Bill came to vacation with my parents at the Island. Wilma calls our yard time "hanging out in Santa Cruz," and she comes over to lend me books, or show us the ladybugs she's releasing into her garden that evening, or just shoot the breeze. I don't know if she knows it yet, but she's Annie's new best friend.

Directly across the street lives a woman named Luann, a tall, quiet woman with excellent style and a dry sense of humor. She and my mom have become besties in the past few years, and are ever scurrying across the street to visit/help/hang out with another, especially if it's an American Idol night. Luann is also not a stranger to our yard time. Not only does she tolerate the view of us spread out like greasy pandhandlers right out front of her living room window, she has also come over to offer her DVD collection and introduce us to her six-year-old grandson. She is one classy lady, that Luann.

Lupe lives diagonally across to the left. She is the third in my mom's flock of lady friends. She makes some mean tamales and yesterday brought us a batch of homemade paella. She has spent the least time hangin' with us in the yard, but I'm pretty sure that's because she has a busier life than the rest of us.

The Ladies of the 'Sac are an older crowd than we're used to running with, but we sure do appreciate their company.

When yard time wears thin, or the sun goes behind a cloud, sometimes we go a little further afield and truck around Visalia in my High School Ride, a navy blue 1990 Isuzu Trooper (see photo) My dad has been babying that car for 21 years, and it drives like the day we bought it. It's still a lumbering beast of a car, but now it's like a cool, vintage lumbering beast.

We just roll down the window, get some '90s jams on the radio (a little Will Smith here, a little Tupac there, a little TLC on the side), and it's like being in a time machine. The car feels like an extension of me that got disconnected long ago—driving it is like being reunited with a phantom limb. I feel like I could drive that car around these streets in my sleep.

And this, right now, is what cancer looks like for me. Walking around the neighborhood, driving around town, singing along to the music, and laying under a straw hat in the sun. I mean, I still have hive outbreaks and emotional breakdowns and less-than-champion moments, but overall, things are pretty mellow. It's not a walk in the park, but the walking certainly helps.

Old Creaky Bones and the Bacon Diet

2011-04-08T12:13:00.000-07:00

Turns out 100 mg of Prednisone is pretty powerful after all. Thursday my dosage went back down to 20, and it didn't take long for me to start feeling the side effects of my Neulasta shot (that's the one that makes my white blood cell count higher and helps prevent infection).

Turns out the stimulation of white blood cell production happens inside the bone marrow, so that when new blood cells are being mass-produced, your bones throb. That hurt. Vicodin helped.

That fun experience also earned me a new nickname: Old Creaky Bones. I made it up myself. I like Old Creaky Bones, I think it's funny. And appropriate. I feel much older and creakier these days.

Ol' Creaky B is actually my second nickname. Annie started tossing around the first one scandalously early on, and now it has stuck. She calls me Fo' Stage. (As in Stage IV). Like, in a rap way. Like this-

Annie: "What up, Fo' Stage?"

Kia: "Not much, What up wit' you, No Stage?"

And that's pretty much it.

Now, Fo' Stage, AKA Old Creaky Bones, has a new mission. The goal is to replace as much of the weight I lost during the spleen invasion as I can, before the chemo (allegedly) gets harder, makes me sicker, and depletes me deeper.

Before I became symptomatic, I was a comfortable, healthy 134 pounds. By the time I got to California in mid-March, I was down to about 127. At the beginning of this week, my lowest point ever, I weighed 122.5.

Predictably, the parents started freaking out about it before I did. Major battles (er, negotiations) have taken place regarding the Cancer Diet I have chosen and it's effectiveness in helping me put weight back on and keep it there.

The thing is, I don't want my Cancer Diet to look any different than my pre-cancer diet. This means I wish to eat vegetables. And fruit. Organic meats. Quinoa. Avocados. Rice. Beans. Sweet potatoes. Broccoli. And lots and lots of cooked greens. (I mean, it's not like I never ate BLTs, chicken wings, Local Burger, or Roberto's Gluten Free Pizzas, but those were special weekend outings, not daily staples).

I may have spontaneously thrown all my misgivings about Western Medicine to the wind, but my nutritional principles will be harder to let go of. My body is ill. Should I not be feeding it the simplest nutrition it could ask for? Vitamin-rich, easily digested cooked vegetables? Protein-rich, hearty stews? Fresh green salads elegantly dressed with Flax oil?

Ironically, there are certain very opinionated parties living in my midst who believe that my pre-cancer diet isn't fatty enough to wage this uphill battle. Every day they practically beg me to go to In N' Out Burger and not come back until I finish a Double Double, Fries and a Milkshake. (See self-assigned art therapy drawing at top).

While I understand the importance of making every calorie count and packing on the heat as a kind of protective layer of future life support, I feel deeply doubtful that my great Cancer Redemption is going to come as a result of a fast food diet.

Most people get cancer and start eating healthier. I've been trying to stick to my guns here, but the cold hard truth is that avocados and cashews just don't seem to be laying it on as quickly as Shredded Beef Enchiladas with green sauce and cheese from Henry Salazar's might otherwise do.

Luckily, a compromise has been reached. A compromise that, like all good compromises should, involves pork fat. My parents and I were in the midst of yet another noisy, passionate disagreement about my weight and my wellness when it hit me. The fattiest, greasiest, yummiest thing I would be happy to eat day after day, right alongside my kale and flax oil. Bacon! Don't have to twist my arm there. Bacon for breakfast, bacon for lunch, bacon on the side with dinner. Whatever else it is I'm going to eat, I'll just have some bacon with it too.

Today's weight: 125. Moving back up the charts! Time to go see about breakfast.

(Fo' Stage and No' Stage)

A Rock and a Hard Place

2011-04-06T08:12:00.000-07:00

Annie and I were resting in front of the TV. We hadn't been in Visalia long, maybe a day or two. Shahab happened by, saw us parked there, and knew he had a captive audience.

*Background Interlude—a lifelong lover of the outdoors, Shahab's attention switched from skiing to rock climbing in his mid-fifties. In the past decade, he has accumulated an astounding collection of rock-climbing gear (which he squirrels away all over the house, from guest-room closets to unused showers) as well as obtained himself a copy of what appears to be every climbing-related DVD ever produced. Those he keeps upstairs, with his collection of Yoga DVDs and Bollywood Dance videos.*

And so a particular Climbing DVD was selected and produced, with the specific purpose to inspire. I was skeptical at first, but within the first two minutes was utterly blown away. The video is of a kid named Alex Honnold—maybe he's 22? 23?—solo climbing Half Dome in Yosemite. By himself. With no rope. 2,000 feet. In less than 3 hours. Don't believe it? See it here with your own eyes.

It is astonishing. Obviously he is familiar with the route, knows all the moves, could do it in his sleep, whatever. But to have the mental capacity to trust himself to just step up onto that giant rock face and keep putting one hand in front of the other, followed by one foot after the other, over and over and over again for two thousand feet. Without any hesitation, or second-guessing, or safety fallback whatsoever. The mind boggles. Or at least mine does. And I do feel incredibly inspired.

So, back on land, here I am, five days post first-chemo in what will hopefully be an uneventful 6-month stretch. Aside from a teensy touch of nausea the first two days—immediately relieved by Compazine and MJ—I haven't actually felt any side effects. Am a little tired, sure, but the 100mg of steroids I've been swallowing every morning seems to be balancing that out as well. Tomorrow I go back down to 20 mg. Could that be the great game-changer? I doubt it.

Combine all that with the internal sensation that Mega-Spleen is howling in retreat like the Wicked Witch of the West under a bucket of water, and this is the reality:

I feel better than I have since the whole thing started.

I feel better than I have since the whole thing started, and it's terribly confusing.

When I went in yesterday for my weekly blood-test at the SRCC (see photo below), Anna and the other nurses were excited by my reports of overall well-being, and happily reassured me that if I hadn't started feeling sick by now, then I definitely wouldn't be getting any sicker before the next treatment. (After the next treatment, which will definitely be a stronger dose, who knows?)

Obviously this is great news. Who would ever wish to be gut-wrenchingly, bone-achingly, mind-numbingly ill? That's craziness! But for now, with my next appointment on the 26 of April, that leaves three loooong weeks to idle away the hours in meditation, preparation of healthful meals, walks around the block, art therapy (see photo above), cribbage games, and restful visualizations of healing. I guess this is what I imagine rehab must be like. Except I get to smoke the pot.

The problem is, idleness has never suited me. I've been genetically hard-wired by a long line of overachievers to believe that sitting in restful contemplation of anything is a waste of time. If I am sitting on my ass, what else could I be achieving? What languages could be learned, instruments mastered, talents honed, skills improved, muscle groups developed, accomplishments accomplished?!

Basically, ever since the first wave of chemo turned out to feel more like a motorboat wake than a tsunami, I've started having these crazy thoughts that maybe just sitting here surviving cancer isn't enough.

I should be taking a longer view, I think at times. What exactly is my plan once I'm through all this? Shouldn't I be signing up for science courses at the local junior college in case I do decide to go into the healing arts? Or looking up Masters' Programs close to Northampton? Or studying for the GRE? What about going to the gym? (Dr. Dad doesn't like to let a day go by without reminding me that Lance Armstrong rode his bicycle every day while he was doing chemo.)

Combined with that strange restlessness is an intense juxtaposition of feelings about being at home.

On the one hand, it is my sanctuary. The only place I could ever imagine myself being while I go through this. Everything around me is deeply familiar, in that way that only childhood homes can be. Only here can all my needs be so perfectly met. Only here can I have the luxury of moving from one pool of sunshine to the next, napping in the grass or praying on the patio. Only here do I feel safe enough to fully let myself experience whatever fate has in store.

On the other side of sanctuary, I'm almost ashamed to admit, is a slightly bitter taste. Is it monotony? Not a whole lot changes on the day-to-day in these parts. Grass green today? Check. Pool still blue? Yep. Dog still begging for meal scraps? Check again.

Also, after 11 years of living on my own, I've suddenly regressed from being a fiercely independent nearly-married almost-30-year-old to what feels like a teenager again. My parents are as open and welcoming as they could possibly be, but the house still comes with their rules. Certain sponges must only be used for certain purposes. Cars must be parked in the garage at specific angles. Elaborate computer protocol is observed. Towels folded. Music kept at a respectful volume. Tidiness maintained.

Regardless. The only way past these little whirlpools of doubt, confusion, boredom and restlessness is focus. Alex Honnold-like focus. No matter what I'm doing with myself day after day, whether it's being sick or being not sick, designing my future or watching six episodes of Friends in a row, I am really climbing half dome. Putting one toe after another in that little bitty crack. Moving my body up, inch by inch, foot by foot. I can't look back, or think of other things I'd rather be or should be doing. Nor can I look forward, to the impossibly distant top of the mountain. I can only look to where I next put my hand. Breathe. And stay attached to that rock.

Chemo Q & A

2011-04-03T08:38:00.000-07:00

In a way, chemotherapy seems to be more scary than Cancer itself. All we hear is how sick it makes people, how miserable and feeble and bald it makes people, how it brings them within an inch of death, just so they can have a chance at life.

I don't want to be naive about it, but I'm trying to keep all that from being a self-fulfilling prophecy. I'm not just going to lay trembling in my bed, waiting for the awful to set in. I'm just going to keep getting up, getting out—like, around the block and back—and being Kia.

So, here's what I can now tell you about my chemotherapy expectations:

Q. What is it like to be in the chemo-treatment-place?

A. So far, so good. The chemo unit is built in a half-circle, and all the patients sit in recliners in their own little areas (separated by curtains), looking out the window, watching TV, reading, or hanging out with a companion.

I would not describe the atmosphere as morbid, depressing or even sad. The nurses are upbeat, and, from what I saw my first day, all the other patients seem comfortable. The vibe is even a little cheerful. I think most of the patients are grateful for their nurses and the care they're receiving.

Q. Is it painful?

A. No. The only pain is the little stick of the needle when they put the IV in. The rest of the time they just drip the drugs in through the IV, which I don't feel at all.

Q. What chemo drugs am I taking?

A. The actual drugs that do the cancer-fighting are Vincristine, Cytoxan, Adriamycin (looks like kool-aid and is probably the most caustic) and Rituxan. Before they give me those, though, I get two anti-nausea drugs, Emend and Aloxi, and Zantac to prevent acid reflux. 24 hours after the big chemo infusion, I get a shot of Neulasta, which helps my body increase white blood cells and maintain necessary immunity so I don't have to become a real bubble-boy.

Q. What side effects might they cause?

A. A billion. The relevant ones are nausea and fatigue.

I've also been prescribed Compazine and Ativan to battle the nasuea at home, and have also been gifted with some herbal anti-nausea therapy that I am ever so thankful for. It works wonders ;)

Not so much I can do about the fatigue, except rest.

Q. Am I going to lose my hair?

A. Yes, that is another likely side effect. As I'd rather not re-enact that cliche cancer moment seen on so many TV shows lately—I'm talking to you, Sex & The City, Brothers & Sisters, and Grey's Anatomy—I think I'm going to get out Shahab's electric razor and do the job myself in a couple days.

As many of you know, I had a major encounter with lice while studying abroad in France my junior year of college. I arrived in early October with waist-length hair, contracted les poux within three weeks (it's pronounced poo) and, after so many struggles with toxic shampoos and sleepless nights on the concrete floor of my dorm trying not to re-infect myself, I ended up shaving my head on New Year's day.

It was a major Identity Crisis at the time, but I did have a little epiphany between nit-combing where I realized that, if my hair was that important to me, I should probably just cut it all off anyway. A character building thing. An anti-vanity thing. Once it was over, of course, I realized I'd never felt so free.

All this is to say that I've grappled with the head-shaving thing before. Been there, done that. So now, it just aint no thang.

Q. Am I going to seek any other alternative/complementary therapies to help my body undergo this intense process?

A. Yes! A few of you had asked in the past if I was considering alternative treatment, and I am. I like to use the term "complementary," because it is more inclusive and implies that I will seek out several healing modalities during this journey.

My former herbalist and boss recommended I have a consultation with the folks at the Mederi Foundation in Ashland, Oregon. (I can do it by phone). My understanding is that they will look at all the materials my current doctors have collected (blood tests, lab reports etc) and go over the list of all the medications I've been prescribed. With that information, they will design a herbal protocol and diet plan specifically for me, as well as introduce a spiritual component that I can practice during my healing time.

Skeptics, be calmed. This avenue has been hotly debated within the immediate family zone and I have promised to cross-reference all their suggestions and be savvy enough to make sure they're not selling me snake oil.

Q. What will I be able to eat while I'm on chemotherapy?

A. Am hoping the Oregon peeps will come through with a diet plan that's perfectly nourishing and easy to prepare. In the meantime, Chemo Nurse Anna wisely counseled me to avoid eating my favorite things during the onset of this medicine. Simply because, were I to become violently ill in the next few weeks, I would never ever want to eat any of those things again in my life! Smart cookie.

Also though, I know it's only been like 36 hours, but I think I can already tell that Mega-Spleen took a hit with the first round of the Chemo. That terrible pressure on my stomach—the feeling of organs pushing up against ribs—I swear, it's diminishing! Soon I will be able to eat like I was meant to eat! Did someone say Fourth Meal?

Q. How important is drinking water?

So important. Anna said that people who like drinking water and know how to stay hydrated respond infinitely better to the chemotherapy and feel less harsh side effects. Makes sense to me—so many dead cells left behind that need to be washed away! I have always been a fan of water, but now I have to give another shout-out to Abby Riley, who introduced me to the "adult sippy cup" I've been toting around since my first trip to Target. (see photo). I can drink while laying down and not spilling all over myself! Love. It.

Q. What about alcohol use and sexuality?

A. I add that question as an excuse to copy word-for-word what's written in the little pamphlet they gave me.

Alcohol Use:

Please do not use alcohol on the day of your treatment. Occasional alcohol may be ok.

Sexuality:

Chemotherapy will not harm your sexual partner. No one can contract cancer from you. It is ok to carry on with sexual relations. The only time you will be asked to refrain from sexual relations is if your blood counts are low.

Any more questions?

Comments

2011-04-03T08:09:00.000-07:00

To everyone who has stopped to comment on this blog:

I cannot tell you how much your words of feedback and encouragement mean to me.

Each comment is a wonderful reminder that people are out there, following along with me on my journey, and gives another nugget of love and energy to take with me. I am so thankful, inspired, and tickled by all of you.

When I learned that some people were having difficulty leaving comments, I did a little investigating.

I've now changed the settings within the blog, making it so that anyone can comment, anytime.

All you have to do to leave a comment is:

*type your comment in the Post Comment box

*below that box it will ask you to Comment As:

*Select either Name/URL or Anonymous from the drop-down menu

*If you want to be anonymous, select "anonymous"

*If you want to leave your name, type it in where it says "name" and leave the URL option blank.

That should be all it takes!

Chemo: Day 1

2011-04-01T15:40:00.000-07:00

Here are some things I love about the Sequoia Regional Cancer Center:

I love my Patient Account Coordinator, Maria. She has been my one true advocate in the insurance/bureaucracy mess. Her role is making sure each patient has the insurance coverage they need to receive treatment, which clearly involves many hours on the phone hounding insurance companies and government agencies until she reaches that goal.

Maria is superb at her job. I love her take-no-shit attitude, her clunky necklaces, her fake nails, her high heeled boots, her sassy haircut and the patience and kindness she has for my family's many questions.

I also now love my Chemo Nurse, Anna. The first thing I noticed about her was her hands. I'd just gotten settled into my standard-issue chemo recliner, and she came over to check my veins. She started chatting and kind of petting my arm, and I was instantly struck by the quality of her touch. It was so calming and lovely, and her hands were cool against my warm skin, incredibly soft and silky smooth. Every time she touched my arm, even just to wipe off some old IV-tape residue, I felt a little wave of cool, clean comfort go over me. She must have one hell of a moisturizing regimen, I thought at first. Now, after some space and reflection, I'm pretty sure it's not Anna's hand lotion that put me so at ease. You just can't bottle that kind of magic.

The third thing I love about the SRCC, if I may call it that, is the space itself. (Far more aesthetically pleasing than the patient rooms in the 3 South wing of Kaweah Delta Hospital.) The honey-colored wooden ceilings give the place a touch of a lodge-y feel, and even give the florescent lights a bit of a warm glow. Big windows let in lots of natural light, and provide a view of a courtyard filled with actual foliage! (Will try to get a picture next time). Big points for atmosphere, SRCC. Well done.

I'd awoken this morning feeling pretty agitated. Have been having really obvious bad dreams, like the one where I'm on some kind of train/rollercoaster, and it's going really fast in the dark and I can't see the tracks ahead of me. It twists and turns and goes upside-down, but because it's so dark I can't see the tracks and brace myself for any of it. Then we slow down outside the tunnel, and I see a happy Beach Boardwalk scene, with so many of my friends smiling on the sidelines, and I'm waving to them and trying to get off to go see them, but of course I can't, and then the train picks up again and I'm back in the dark, holding on for dear life.

I mean, come on. Can dreams be cliche?

Anyway, I felt in need of some kind of centering exercise before the big First Treatment, so Annie and I dragged some old sofa cushions into the backyard and sat in the morning sun.

Even though I'm still on the bunny slope of a Meditation Practice, my intention for this morning was very clear. I know there have been so many people thinking of me and praying for me, sending their positive energy and good vibes across so many miles. What I wanted to do this morning was receive it. And so I did. I just put my little mental antenna into the air, opened the signal, and let all those prayers and thoughts and vibes pour straight into my heart. From there I could feel them disseminating to other places in my body, building up my strength and courage. It was a tremendously positive experience I will try to repeat as often as I possibly can.

Thanks to all the love I tucked in this morning, my first chemo treatment was a breeze. (It is, however, supposed to get more taxing and toxic cumulatively, so rounds 4, 5 and 6 will not likely be easy. Anyway, I'll take every good day that I can for now.) Anna was very thorough as she talked me through all my questions—think I'll do that Q&A in the next post—and explained the treatment I'd be receiving.

Watching the chemical juices drip from the hangy bag into my arm, I couldn't help but think about the person I was just a little over a month ago. Manager of a herbal medicine shop and aspiring herbalist, I'd eat three bulbs of raw garlic before I'd even think about taking an antibiotic. I conquered bronchitis in a week this winter with a strong decoction of goldenseal, pleurisy root, elecampane, marshmallow and slippery elm. I turned up my nose at Tylenol. I shunned Robitussin. I made poultices. I was just about as far off the pharmaceutical track as a person could get, and had no intention of ever turning back.

And now, one month later, I have been prescribed Prednisone, Alloperinol, Vicodin, Compazine, Ativan and Yaz. Intravenously, I have received Rituxan, Emend, Aloxi, Decadron, Zantac, Neulasta, Vincristine, Cytoxan and Adriamycin. I have taken them all willingly—enthusiastically, even—because I believe they are going to save my life.

(This is my view from my computer as I type this. She's a different kind of lifesaver.)