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Tuesday, October 18, 2011

A Glass Case of Emotion (!)

I believe Ron Burgundy says it best:

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

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

Sunday, October 9, 2011

A Room With A View

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

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

Saturday, October 1, 2011

Looking For My Perfect 10

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

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

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

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

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