I was never big on hazelnuts.

The surgery went well yesterday. The nurses were nice, the IV was placed on the first try, and almost everyone had a sense of humor. I went to sleep gazing up at my cute anesthesiologist and then I woke up breathing in cold, crisp oxygen about an hour later. Dr. Hamilton removed three lymph nodes, with the largest being the size of a hazelnut... which is big for a lymph node, but nothing compared to the ping-pong ball sized one they pulled out of my neck last year. I believe we get results today or tomorrow.

I was in an anesthetic/pain med stupor ( ie : high as a kite) most of the evening. Once I got into bed it was strange dreams and drenching night sweats, but no fever.

Other than a bit of discomfort and some swelling, I'm feeling pretty darn good today.


I believe it's time to sit outside PT's, sipping hot coffee and enjoying what seems to be an unseasonably warm day.

Biopsy. For real this time.

The biopsy surgery has not yet happened. Let me explain.

I went to Tallgrass Surgical Center on Monday fully expecting to get my biopsy done right there is the an exam room. However, after some thorough palpitating, the doctor decided that since the node was rather deep in the tissue, he would rather do the surgery in an actual operating room with me completely out under general anesthetic to minimize movement. There are, as I guessed, a lot of important things going on in one's armpit. Many arteries and nerves and whatnot.

So I have my biopsy surgery tomorrow at 2:30 pm. I'm not very worried about it. A lot has changed about me in the last year and a half, and I'm constantly thankful for who I've become. Not too much fazes me. I guess once you've had poison pumped directly into your heart every two weeks for 8 months, had your blood drawn weekly, had radioactivity injected straight into your vein and had radiation directed at your bolted-down head and neck daily for a month, there's just not going to be much out there that truly freaks you out.

..with the exception of a stem cell transplant. I'm pretty nervous about all of that. But when I find my mind wandering into future worries, I just glance down at my hip, think of Jon, and remember: "One day at a time."

On the beach

Surgery tomorrow. Just a little biopsy. Outpatient procedure.

I'm calm. I'm feeling loved and protected. Like I can conquer anything with the help of all these amazing people in my life.

And in my mind, I'm back in Sebastapol, California, on the beach. Poking things with a stick, gazing into fog and feeling tiny compared to the ocean. Camping next to clucking chickens, eating crab caught fresh the same morning.



...gate gate pāragate pārasamgate bodhi svāhā...

12/25/10

Sorry for yesterday's morbid entry. Tough night. Today has been much better.

I had the pleasure of eating brunch at my sister's house with the three families that raised me. My sister lives with my best friend from high school, Beth, and her best friend from middle school/high school, TJ. We set them up a few years back, and they've been happily married for over two years now. So, long story short, I spent most of my formative years hanging out with Beth at her parent's house, and Laura spent hers with TJ at his parent's house. It was a fantastic reunion.

It was wonderful and positive, full of laughter. Everyone treated me like a normal person. No looks of pity. No asking me if I was okay. Just enjoying the moment, opening gifts, eating waffles. Lovely.


Biopsy on Monday. Nervous, but calm. Feeling so loved.

Christmas eve

At the christmas party tonight, so many people came up to me to tell me how beautiful and healthy I looked. They commented on how rosy my cheeks were, on my nice little body.

I didn't have the heart to tell them that cancer was quietly eating away at me.

Merry Christmas. Here's to surviving 2011.

preparation

When I was a kid, my best friend and I would go on epic walks. Or as we called them, "Great Adventures." We never went anywhere special. Just roamed the neighborhood, hung out on dirt piles and around the bulldozed and plateaued areas where expensive housing was to be developed near French Middle School.

Despite the fact that these "adventures" were merely glorified 2 hour walks, we had a ritual of preparation. We would take literally all afternoon stuffing our backpacks full of the things that we were sure we would need to survive. A variety of snacks and drinks, toilet paper, pens and paper. Probably a few changes of clothes. It was strange, but so were we.

I remembered this today because I feel myself preparing again. Trying to put everything in order before I'm too sick and confused to deal with it. People to call, to meet up with. There are so many friends and family members that I want to see so that they can hold this image of me in their heads. Smiling, looking healthy. I feel myself pushing the people I love away and then pulling them back. How do you prepare the people around you for something that you yourself aren't even prepared for? I guess I'm trying to figure that out.

I'm sitting on train tracks, watching a bright light come nearer, and I can't move. That train will hit me on January 3rd, and I'm not ready. I'm not ready to be sick again.

a pheonix

So here is a tentative time line (this is a shortened version... I will know more as I ramble further on this journey):

On Monday, Dec. 27th, I will be getting the enlarged lymph node under my right arm surgically removed for biopsy.

If that all goes "well", I will be starting a high-dose chemotherapy called I.C.E. on January 3rd. I will get two "cycles" of this chemo, with each cycle being 3 weeks. I will be getting Neupogen shots to bring my WBC count back up after each cycle. (If you aren't familiar with these injections, they stimulate white blood cell growth in your bone marrow. I have NEVER felt pain as excruciating as this. I am not a whiner. It's like my bones are shattering and exploding from the inside. I informed the staff that I will be needing the most potent pain killers on market, I don't care the cost. They acquiesced.) After this, I will get an interim PET scan to see how well my cancer has responded.

After those cycles of I.C.E., I will begin the evaluation process at KU Med's Bone Marrow Transplant Center. If my organs look good, etc, I will have a strange looking three-pronged catheter surgically inserted into the right side of my chest. (It will be hanging out all gross like.) Soon after, I get huge doses of Neupogen, and then my stem cells are harvested from my blood through the catheter. (A machine takes the white blood cells and gives my back the red ones.) It will be around 5 hours a day for 2-3 days to harvest the cells needed. The cells are then frozen for use the next week. (In the notes I took, I labeled this the "Stem Cell Slushie.")

The next step is a different high-dose chemo that completely destroys my immune system. My white blood cell count (and therefore immunity) will be in the negatives. This part will probably suck the most. On the seventh day of this treatment, I will receive my stem cells. For the next week, I will be a skinny, hairless little thing confined to either the hospital or a bed. I am going to rock a surgical mask to minimize my chances of getting a virus or infection. I will receive transfusions, and will have my own little fanny pack full of anti-vomit drugs. Sexy, I know.

After this, I am reborn. From the ashes, my body will rebuild. As the stem cells do their magic, I will slowly feel better and build an immunity. At a hundred days post-transplant, I will have an evaluation and a PET scan. And goddamn it, I will be cancer free.

I will be a fucking warrior. I will be a two-time survivor at the age of 25. Tough as nails, full of love and light. I can conquer anything. I have the most amazing friends and family. I have my smile. I will beat this.

One day at a time

Okay. Let me get you up to date.

I had a PET scan. I waited anxiously for results, and the results are this: it's back.

In one hour I am on my way to KU Med's Bone Marrow Transplant Center. They will tell me all of the details of the next step in my treatment. It's looking like high-dose chemo and a bone marrow transplant (with myself as donor and recipient.) Dang. Double dang.

How often in a person's life do they truly know how much their friends and family love them or how kind strangers are? Literally over a dozen of my friends and acquaintances have approached me, asking to be a bone marrow donor. They are serious. They have done the research, they know what pain they would be in for. And they offer this despite that because they love me. Because they think I am worth it. God, I feel so loved. How often do you realize that kind of love? In that way, I am the luckiest girl alive.

People have prayed for me, chanted for me, sent positivity and light my way, asked how I am, asked what they can do, made me meals, told me I was beautiful and gave me courage... I am so thankful that my heart could burst.

Here we go again.

And this time, I know I can beat it. This time next year, I will be a 25 year-old two-time cancer survivor. I will beat this. I have so much more to do.

Dang.

CT scan results showed enlarged lymph nodes in both arm pits and in my stomach.

Definitely not the news I was expecting. I really had myself convinced I'd be in and out of his office, absorbing good news and scheduling my de-porting surgery at the front desk. I forgot that it's called "remission" not "cured."

PET scan on Tuesday. Answers on Wednesday. Staying calm and positive for the most part, but my mind keeps slipping into a world of what-ifs. I'm scared, but I refuse to live in fear. It's a hard balance to achieve. One thing to think about is that I have a nasty cold at the moment, which means it's a total possibility that that's the reason the nodes are enlarged. They might just be working overtime to filter out a nasty virus.

I hope, hope, hope.

Fog

One thought tonight runs laps in my empty head: "I'm alive, but at what cost?"

Chemo brain has me feeling stupid, forgetful, confused and all around mentally inept. I can't remember words or how to spell. That's what kills me the most. I read and read, hoping it will come back, but everything is still so blank... I just draw blanks.

By the way, I have officially called AAA road service TWICE in the last few weeks to break into my car because I locked my keys in the ignition. Twice. A period of time only spanning a week or two. In the FREAKING ignition.

Where is my mind? I want it back. I feel empty and stupid and incomplete. I feel like the Sara I was died last year, and this new idiotically forgetful shell of a human is left.

I know that from day to day and year to year a successful human should be different from who they were. You should continually be changing into someone different. But dammit, when you change throughout time and throughout your life, you're supposed to become a better person. I'm not. I don't even know who this person is they've left me with.

I just want this fog gone.

flesh and blood, steel and stone

When looking though my wallet in search of my Library card the other day, I found that I was still carrying my Community Blood Center card, from when I would donate blood every 8 weeks or so. It feels like it was not too long ago that I had finally cumulatively donated a total of a gallon of blood. It used to be my tradition to donate at every blood drive on campus; one time I even donated on my birthday. I remember when I was a little girl and I found out that my father donated blood every eight weeks. I was horrified. I couldn't understand what would make someone volunteer to be poked with a needle- the most horrific and traumatizing thing I could think of with my young mind. I remember him saying something about saving lives, doing a good thing, helping people; and some joke about how he could always make more. Years and years later, when there was a blood drive at my high school, that memory of my father's good deeds popped into my head. At 17, I decided that there was no better time and no better way to get over my fear of needles than right there in that gymnasium, donating blood.

I know it's a silly little thing, but it still hits me kind of hard that I can never donate blood again because of Cancer and chemo. I used to have it indicated on my Driver's License that I was a doner. Now, no one wants what I have. All that blood and skin, all of those organs that once could have saved lives now are no good. Unwanted. I feel a bit useless, not that I was making that much of difference with my little pints of blood a few times a year or my gesture of donating any scraps of myself left after my untimely demise to be used on the far-off chance I kicked it in a car wreck. There was something so noble about others' lives coming from death. It reminds me of how the Native Americans used every single scrap of the buffalo. They praised and thanked those creatures for dying so they could live. Skin, meat, innards, hooves, everything was reused. I guess I'll just have to make the most of my skin and eyes and blood and heart while I'm alive. Once I'm gone, they're no good.

Okay, I'm getting off-track. Ramblings.

One week until my CT scan.