1/28/11

"We must be willing to let go of the life we planned so as to have the life that is waiting for us."

- Joseph Campbell





...I will give a more substantial update tomorrow. My mind is feeling fuzzy.

ICE 3/3, Round two

Very tired and nauseated. Sad. Breathing. I just want to sleep all of this away.



One day at a time, Sara.

ICE 1/3, Round two. FIGHT!

And here I am again; sitting in this chair, watching late January shine through the window in my little corner of the Cancer Center. Today is the beginning of my second cycle of ICE chemo. In a perfect world, I will have achieved remission after this round according to my upcoming PET scan, and we can stop with this ICE stuff and move on to the heavy artillery.

As for my hair, the bulk of it came out in wet clumps in the shower on Saturday. That, combined with the fact that it was covering the collar of every shirt I would wear, poking my neck and driving me crazy, lead me to the conclusion that it had to go. My father and I had a lovely bonding experience as he buzzed my head for me.

In other news, I'm trying my damnedest to get my treatment financed, while simultaneously trying to distract myself from the reality of the next few months of my life. Music helps. Laughing helps. My amazing friends help. It's all beautiful. I keep hearing that in my head.

That's all for now, folks.

It's like 10,000 spoons

I finally broke down and paid for a hair cut on Saturday.

...now my hair is coming out in clumps.

Isn't it ironic... don't ya think?



Time for the mohawk!

good news...

My white blood cell counts are back up to normal levels!

This is excellent news on two levels. One, it means that I can go back to work and be in public places without worrying about suppressed immunity. Two, the Neulasta worked without excruciating pain! This will make life quite a bit better when they give me the huge doses of it for The Harvest next month.

Chemo countdown: one week. Then I have a PET scan to show how awesome I've responded to chemo on Feb. 7th. More news to come when I hear from KU med.

Now, off to pretend I'm normal for a little while longer.

breathing

I've been feeling great. Physically. Mentally, kind of a mess. But all in all, doing very well.

I'm busy preparing. Buying comfy pants and low cut shirts, things that can be worn comfortably in hospitals all day, shirts that expose my port for access with infusions and whatnot.

As for my mind, I'm finding there is really no way to prepare, mentally. Aside from meditating, breathing, not living in fear, but realizing that everything is about to change, and that for a while, things will be really horrible. I know, in theory, that this will be the hardest thing I have ever done. The only way to prepare for that is to not freak out.

I'm off to find more drawstring pants.

The Nadir

I apologize for the lag in updates. I have been feeling so well that I picked up shifts at work yesterday and today. It's been so nice to get out of the house, off the couch. And heck, make a little money and see my friends, too.

I had blood work and an office visit today. I walked into my Onc's office, and he didn't even look up from my chart as he said, matter-of-factly: "Sara, your counts are shit." (I love my doctor. He's an ass.) What he meant was that my white blood cell count is very, very low. So, I've been instructed to start taking the Cipro they had me keep around in case of this sort of thing. (Cipro is short for Ciprofloxacin, a drug used to treat and prevent infections caused by bacteria. Powerful stuff.) I am to take it twice a day until Monday, when we will do more blood work to keep an eye on things.

What this means is that I have hit the "nadir" (the point of low white blood cell counts) with no debilitating pain from the Neulasta (so far)! I have been very achy today, and it's now getting a bit worse, but it's more annoying and uncomfortable than really painful. Was it the Claritin I've been taking for the last week? The preemptive Ibuprofen I've ingested? Maybe this Neulasta really is different. Needless to say, I'm very happy. This is pain I can deal with.

The rest of our conversation during the office visit covered our plan for the next few weeks. Monday the 17th: blood work, Monday the 24th: Blood work, and I begin the first of three days of my second cycle of ICE. Tuesday: ICE, Wednesday: ICE. Sometime the week after, blood work. Then, on February 7th I get a PET scan to see how I've responded. Moment of truth. From that point my Onc confers with KU Med as to the next step. If he doesn't like what he sees on the PET, that might mean a few more rounds of ICE. If the scan's looking good, we move on to the harvest. Man. That term is so dramatic, it needs to be capitalized and italicized. The Harvest. There we go. Dun dun duuuunnn.

Anyhoo. I'm feeling surprisingly well. Fatigued, definitely. Weak. Really feeling that achy bone pain now. But the nausea has passed. The chemo brain is manageable. Not bad, not bad at all.

Well, off to bed.


Oh, and Rock Chalk Jayhawk!

I just read this:

"The agony of breaking through personal limitations is the agony of spiritual growth."

- Joseph Campbell, The Hero With a Thousand Faces


Love it.

waiting for a miracle

I think I'm starting to feel the Neulasta injection. For real this time. I started getting the all-too-familiar pangs earlier in the evening. Very mild, but worrisome. I took two Ibuprofen and have had a heating pad on my pelvis non-stop; so far, the pain has backed off. I'm just scared that when I finally slip off to sleep, it will be like last time; waking up sobbing, in uncontrollable pain.

So, I guess I'm hoping for the best, and preparing for the possibility of a less than desirable outcome. I know that the last month has shown that I am sometimes stupidly optimistic, but frankly, I prefer living that way. I'd rather be stupidly optimistic than sitting, waiting, fretting, expecting the worst, becoming depressed and living in fear. If this disease has taught me anything, it's that I can't live like that. I won't live like that. That's not living.

Thinking positively, staying calm. Hoping, as always.

Sara smile

Goodness. It's Saturday already? I'll catch up.

Thursday night was rough. I started getting a bit of a headache after ten, and by midnight, I had a full-on migraine. I'd never had one of those before. Good god. I lied on the couch barely able to move or speak for the next 7 hours. The time I spent in this state was punctuated only by using the restroom and vomiting. (Vomiting with a migraine. Very. VERY painful.) Marty slept on the couch next to me, and took care of me all night. I finally called mom around 7 am. Like the magical mom she is, she was suddenly there, holding me, massaging my head, bringing me water, telling me it would be okay. By noon, the pounding was down to a dull roar. I slipped in and out of consciousness for the rest of the day. I don't think I fully recovered until today.

Since then, I've been spending a lot of time on the couch. A bit of random pain, dizziness, fatigue and a LOT of nausea. It came to an apex today, but finally eased off this evening. Heck, I've eaten TWO meals today. That's kind of a big deal. Before, all I'd been able to get down was bread. I hesitate to think that it's uphill from here, but man, it's nice to dream.

Today was emotional for me. Up and down. Maybe it was all of the pain of the last few days combined with the seemingly unending nausea mixed with the fact that I've been stuck on a couch for most of the week, left to stew in my own thoughts.

I try to stay positive, but I'm only human. I think about death. About refractory situations. About impending infertility. About the path I'm about to go down next month. And I finally admit to myself- I'm scared. I'm so, so scared.

But it isn't about never being scared. It's about being scared as hell, and fighting anyway.

the day after

I forgot how it feels. The numbness. And at the same time, heightened senses. I smell everything ten fold. Add nausea to the mix. Ugh.

I forgot about the pain. I remember last time, when I could feel the cancer dying. I could have sworn it hurt more... it was this horrible ache. At this point, I feel like I've been beaten up. I feel bruised and sore. On my face, along my jaw, my chest, clavicles, underarms, down my sides. I'm starting to feel pangs in my pelvis... is that the injection kicking in already?

It's hard to think straight. Please excuse my foggy, disconnected chemo-induced ramblings.

I had a follow up with the surgeon who did my biopsy. He said all of the seven nodes he removed were cancerous. He recommended that I start treatment. Ha. He was nice. He even sang me a song.


Okay, enough, I don't feel like I'm making sense.

as the evening progresses...

I feel very... heavy.

3/3

Third day of ICE completed! Now for 18 glorious days of not sitting in a cancer center recliner for 8 hours a day. I did, however, get my Neulasta shot today. I am hoping that this time there won't be any excruciating pain. Hope hope hope.

So many friends came and visited me while I sat today. It was great, and really helped pass the time. I'm so lucky. I'm grateful and humbled. I don't know what I did to deserve these beautiful people that surround me. I love you all.

Anyhoo, I'm sleepy, nauseated, swollen with fluid, and glad to be at home on the couch, cat at my side. Although, I'm proud to say, I had enough energy when I got home to make a big ol' salmon dinner, complete with roasted new potatoes and salad with red onion and feta. I snarfed it down before the nausea hit. Score.


So far, so good.

2/3

There were a lot of things this afternoon that I thought about writing down. I really run the gamut of emotions in that chair.

I thought about writing about the sadness in my mother's face this morning. Some days it just gets to you. I understand that she wants to make her little girl better again, she wants to fix everything. I love her for that.

I thought about writing about the Vietnam vet that was in the chair next to me. He wanted to talk, and I never mind listening. I love a good story. Even if it's about getting spit on when he got back from the war. Even when it's about the VA hospital ignoring the cancer spreading across his forehead for five years. It was his second to last treatment today, and he was all smiles.

I thought about writing about the sun streaming into my corner of the cancer center today, watching it grow and change and fade as I sat from 9 in the morning to 4:30 in the evening. I got pretty restless today. That's a long time to be sitting, staring up at tubes and IV bags.

Buuut did I mention that I downloading Scrabble onto my Kindle? OH YEAH. Even when I'm stuck in that chair, life is good.

Life is good.



One more day of ICE to go and then 18 days of rest. Oh, and just one teeny Neulasta injection. That shouldn't kick in until Monday.

1/3

It's a sunny day in the cancer center. Light streams in through large windows, colorful glass orbs hang from the ceiling peacefully.

And here I am, back in this chair. Sitting next to this noisy contraption, this IV pole on steroids. Bags of chemo chemicals, steroids, anti-emetics, saline dangling from metal hooks again. Needle in my chest again. Weight, temperature, blood pressure have been recorded. "Last name and date of birth?" I don't even pause anymore. "Sign here. And here. And here..." I sign and sign and sign and initial.

God, I'm back in this chair. I'm staying positive, I promise. It's just that this is such a strange place. The cancer center. Hope and loss coexist equally here. Sadness and sickness, faith and love. Fear of death and fighting for life, all of these things hang in the air. Some of us are dying here, some of us are living. All in one room.

I breath deeply. I smile. If I'm lucky, a bald headed warrior will walk by, and she'll smile back.

ICE begins

Today is the day it begins again. I would be lying if I said I was ready. I would be lying if I said I wasn't scared.

So here goes day one of three days of eight-hour sittings.


I've got some fight left in me.

Lo! the bird is on the wing.

A new year, like a breath of fresh air. A new chance. A time to look back and appreciate how we've changed and who we've become, a time to look forward with hope.

Last year. Wow. I finished chemo. I went through radiation. A boy I loved died. I officiated one wedding, I was a bridesmaid in another, and I was asked to participate in one yet to come. Babies were conceived, babies were lost, babies were born. I began the year with a bald head, and ended it with a head of hot pink hair. I successfully finished a semester back in school, despite chemobrain and self-doubt. I feel more beautiful, more wise, tougher, stronger than I ever have before.

This next year will be the hardest and most rewarding year I have ever known. I welcome it with love and hope.


So here it is: my resolution for 2011 is to be in remission by my 25th birthday. And to live to see 2012.


If you have a glass, raise it. I propose a toast. To life. To the pursuit of bliss. To unconditional love, compassion and understanding. To smiling for no reason at all. To random acts of kindness. To faith in the human race. To faith in ourselves. To life. To living.