To all of Kia's family, friends and fans

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

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

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

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 (!)

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. 

A Room With A View

No-Window Face

The rooms at Stanford are much bigger than the ones at Kaweah Delta, but they're doubles. When I first arrived this time, my roommate had the bed with the window. I got the bed by the door, and was surrounded by nothing but vile florescent light and hospital curtains. 

It turns out that a view of a pole is better than no view at all. 
Mercifully, below is the view from our new room. We were graced the opportunity to transfer into a better room today, and I can now testify to the Difference A Window Makes. How dare they ask anyone to stay on the Bad Side of the rooms? 
Still, this is Stanford, so there are plenty of improvements to be found outside the unit. The gardens here are lush and elegantly sculpted, a world away from the pigeon-poop covered patio at the hospital back home. They provide live music sessions in the Atrium at lunchtime twice a week, and a decent menu from which I can custom-order at my leisure three times a day. Annie gets her very own cot, and the TV has the Food Network. 

It nice to be somewhere busier with a bigger budget, although I have to say I have nothing but love for all the nurses that have been taking care of me at home. 

New View

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

Looking For My Perfect 10

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


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


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


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


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