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.

pigs on the wing

Wow. Time flies when you're taking tough classes, working more days than not and trying to have some semblance of a social life.

All things considered, I'm doing well. I've got a cold coming on, but Marty is forcing-feeding me Echinacea like a crazed homeopath, so maybe we can ward it off. My mind still feels like it's melting away or shattered into pieces or at least half-gone. I'm still not back to "normal" yet, whatever that is. I'm still having trouble with memory. Marty asked me last night what kind of a kid I was, and I honestly couldn't answer for the longest time. I could not for the life of me remember what I was like when I was younger. I settled on "Dramatic." Was I sweet? Or was I loud and obnoxious? Was I driven , low-key, pushy, fun? Was I social or was I a loner? I don't know. I hope it all comes back to me. I just read as much as I can and hope that all that knowledge puffs my shriveled little brain back up. I'm getting better with words. I'm remembering more vocabulary and applying it. I think all of the papers I've had to write this semester have helped with that.

Only two more weeks and this semester is over. I'm enrolled for 7 hours next semester, and hopefully after that, I'll go full time for two more semesters and then... graduation! That is, if I get enough grants and scholarships to get me through the year without having to work and worry about bills and groceries. I just cannot juggle full time school and working. It's just something that I know that I am unable do, or I will not only do poorly in my classes, but probably have regular panic attacks. I get overwhelmed easily, and I learned to accept that and work with it late in my college career. One neat thing that I came across when researching scholarships was one exclusively for cancer survivors under 25. I started writing the essay last week, and for the first time in I don't know how long, I sat down and wrote. Not for a blog or for school, not some paper about Don Quixote or Linguistics, but my feelings and thoughts about my experience with my diagnosis, treatment and subsequent remission and how it has shaped the way I see and do things now. I haven't gotten far on it, but I'm excited about the possibilities.

Well, homework calls. Back to reading Arabian Nights for World Lit. On the bright side, It's a wonderful book. Being an English major's not so bad.

Final note: CT scan in 10 days. Feeling nervous. If it's a "clean" scan, I want this port OUT! :)

rejoice, rejoice/ we have no choice/ but to carry on

Admittedly, I am horrible at this blog thing. I'll try to be better.

Fast forward three months. I wish I was on the road again. The trip was blissful: mountain cabin, Rhythm Devils tour, backpacking through the woods in Oregon, sipping amazing espresso in Portland, camping in the redwoods, driving on Highway 1, seeing the ocean again, driving driving driving, waking up in a new place every day, Berkeley, Telegraph Avenue, Phish tour, the long road to Las Vegas, (complete with bats!) the beauty of Utah, being held on all sides by the mountains in Telluride...

God, it was beautiful.

Regarding the tumultuous and tumorous journey of the last year, I have a clean post-treatment scan under my belt as of a few weeks ago! A few little nodes in the right armpit area mean I go back in December for another scan. (No biggie. Just making sure nothing's growing.) I told my Onc that he could go ahead and schedule my surgery to have my Port taken out. I'm ready. He says he'll give it the green light if I get a clean scan. In other words, I hope to have the last remnant of treatment yanked out by the winter solstice. Beautiful.

In other news, my mind has been a mess. Up and down, like waves crashing. I'm insane with hopelessness one minute, calm as a Buddha the next. I'm having trouble remembering things still, and school is very tough as a result. I have panic attacks frequently, or little episodes of depression. I figure that this is all pretty normal after the last year of being pumped full of poison. As a friend of mine reminded me, "The effects of chemo don't stop at your neck." I guess my mind and body are still reeling, no matter how good I feel physically. (And I do feel good. So much energy!) The only issue that still plagues me on the physical side of things is the Raynaud's Syndrome stuff (which has actually gotten worse) but it's not painful, so no more complaints here. If Raynaud's is the worst lasting side effect I have after everything, I consider myself very lucky.

I feel lucky to be alive either way. Yet the further I get from the horror of the last year, the more I forget to put things in perspective.

"Dear Sara: You are ALIVE. Quit yer bellyachin'."



More later, I promise.

On the road...

I'm having a blast playing up here in the mountains, but I have no steady internet.

Stay tuned for a decent post on Thursday when Marty and I get settled into our hotel room (free wifi!) in Denver for the Rhythm Devil's show.

I'm feeling better every day, by the way.

And I'm smiling. A lot. :)

The Hollow Men

The last lines from the T.S. Eliot poem The Hollow Men are relatively well-known:

This is the way the world ends

not with a bang but a whimper.

They popped out at me a few days ago, and I couldn't shake them. I feel like that's how treatment ended for me. Not with a bang, but a whimper. I wanted to celebrate, I wanted to party and run around with my friends, drink a few pale ales. But it all just... ended one day. And since then I haven't had the strength or stamina to be enthusiastic about remission and the end of treatment. I'm still dealing with side-effects. I don't feel well yet, so a celebration for my being well seems wrong.

However, yesterday was my LAST appointment with my Radiation Oncologist, and it finally hit me. I'm done. Yes, I have scans in September. But treatment is done. I'm cancer free. I did it. My body did it. I was filled with something that I can only call understanding. I've been smiling ever since.

It's a sunny day, and I plan on being out in it.

6/27/10

I've got the post-radiation bluuuues.

Fatigue is kicking my butt. I sleep about as much as the cat. My daily routine is usually something like this: wake up, get coffee/work shift at the shop, come home, sleep for 4-6 hours, get up, eat dinner/ go out for an hour or two, go back to bed. No strength, no stamina. I wonder if it would help or hurt to push myself physically; should I be working out, or taking it easy? I'm not sure what to do, but I have to make sure to listen to my body this time around. I'm just so scared that this will never go away.

I've been thinking about Jon a lot. I miss him.

The road trip is coming together nicely. I've been researching coffee shops to visit. Looks like Portland has about a million.

I promise to write more soon. I think for now, I'll get back in bed.

Joyful Girl

Life is good. I'm working 5 days a week, the fatigue is (slowly but surely) fading day by day, and I found out today at my follow up with the Onc that I don't get a CT scan until September. That means, other than my Radiation follow up appointment in early July, that I am done being at the hospital every week, every day. As much as I love all of the nurses in the cancer center, I am ready to have a schedule free of office visits, bloodwork, chemo infusions and radiation appointments.

The "Road Trip of Epic Proportions" planning is coming along pretty well. Looks like we'll be on the road to the cabin in Colorado by July 14th, back from our travels to the west coast no later than August 17th. I'm ready for some adventures.

The End

I'm done. I survived treatment. I survived cancer.

I finished my final radiation treatment on Friday. It doesn't feel real yet. Just like being done with chemo didn't feel real until three weeks later and the day came around when I would have gotten my next treatment and I realized I wasn't in that chair. Come Monday at 2:30, I will realize that I'm not bolted down to that table like I have been at 2:30 for the past month of Mondays. I will breathe in deeply, breathe out slowly and go on with my day with a grin on my face.

I will look up at the sky every day and be thankful. Rain, clouds, sun, sleet- I have the honor of experiencing. Every cut and burn and headache, I will be thankful that I am here and I can feel. Every person I love, I will tell them. I'm so happy to be here.

Now it's time to rebuild. This may take a while.

And that's okay. I've got time to spare.

Only 3 more to go!

Today is a beautiful day. The sun is out, and big fluffy clouds abound. Lovely, lovely.

Jon's funeral was yesterday, and it was nice. I am finally feeling more at peace with his passing. His friends read a Bukowksi quote in the middle of a Catholic mass, and Jon would have loved it. I think that they didn't just party with him, they really "got" him.

I decided that the best way to honor someone after they've passed away is to emulate their best qualities, the ones that taught you the most. So I will strive to be non-judgmental, never take anything personally, and to write every day. Even though I didn't get to know him long enough, it was an honor to know Jon at all.

In other news, I only have 3 radiation treatments left! That's right, I will be D-O-N-E on Friday. I am so happy about this that words fail me. I went on my first bike ride since all of this cancer hulabaloo started last August, and it felt great. I couldn't go far, and my arms are weak and shaky now, but it was a good start.

Marty and I have begun to really sit down and plan our Road Trip Of Epic Proportions. A huge atlas has been bought, a calender is gathering pen marks. So far it's looking like we'll be in the cabin in the Colorado mountains for about a week, and we'll catch two Rhythm Devils shows while we're there. Then we'll jump up to Boise, where we'll catch another RD show and hopefully see some family and friends. Next is a good week in Oregon with a friend, then down into northern Cali to camp in the Redwoods, then down further to Berkeley for a few Phish shows at The Greek Theater. Next is possibly L.A., but this is where the plans get hazy. So far, it's sounding good to me. I just want to be on the road again. Living again.

He's Gone

My good friend Jon died yesterday.

He was 20 years old.

I love him very much. I miss him already. He was my favorite work buddy, he was someone I could tell anything to. He was absolutely hilarious. He was an amazing cook. He loved music and being on the road and bad Chinese food. On a daily basis, he would make me laugh so hard that I couldn't catch my breath. When I was going through chemo, he was one of the few people I could just babble my disjointed and nonsensical thoughts to. He was non-judgmental. He was an absolute hopeless romantic. Everyday, he would say some of the most hilariously ridiculous things. It got to the point that the staff just began writing it down and taping it up on the fridge at work. So many "Jon-isms." I told him we should make a book of them some day.

He had a beautiful tattoo on his arm, and when we worked together a few days ago, he was thinking of getting more. He was also holding his stomach, making faces, lamenting how he had eaten bad Chinese food for both breakfast and lunch that day. We were dancing around with joy last week when we found out we worked together twice a week on the new schedule.

He was gorgeous. He had an amazing smile. He had kind eyes.

He never seemed to listen, but he would be when you least expected it.

We all keep saying "should'a, would'a, could'a." We all keep wondering what we could have done to help him.

I know he was lonely. All he wanted was a sweet girl to love him and who he could love back. He wanted a deep connection, someone to take care of and make amazing meals for. But deep down inside, he was SO shy around girls. He always told me that they had to talk to him first, he couldn't do it.

2 for 1 burger Mondays won't be the same without you. Working won't be the same without you. Summer won't be the same without you.

God, Jon. I miss you.

#10

Goodness. Life has suddenly gotten very busy on me lately. I have the honor of being in one of my best friend's wedding this week, and there is SO much to do for that. Marty and I have started planning our most epic road trip with a little more detail. I'm alright, aside from fatigue.

In other news, I get treatment #10 today. Only 7 to go!

I promise to write more tomorrow when I have more than a minute to spare.

Radiation #2, #3

Tuesday was my first treatment, and it was very, very freaky. I guess I was expecting to have an office visit with my radiation Onc, who would explain to me exactly what would happen, exactly where they were directing radiation, how much I would be receiving total, and how many treatments she had decided I would need to have. Nope.

I walked in and was immediately ushered back (by one of my incredibly cool and nice techs, Amy) and was instructed to take my shirt and bra off and get in a gown. (No biggie; at this point, the hospital gown is the second-most worn piece of clothing in my wardrobe, other than my black hoodie.) After that, I was brought to the room containing the huge radiation contraption and was laid down on the platform sticking out of it. Then came "the mask." The one they molded last week. Let me just say it's a bit snugger when cool. They bolted me down (that would be the freaky part- being immobilized, unable to open my eyes or speak clearly, just laying there, everything out of my control) and they sent me in for a CT scan to line up my position and get everything perfect. After that scan, the platform went back out of the machine, and the techs made minor adjustments, as per the doc's orders. After that (a looooong time after that, still bolted down) the platform went in again and the actual therapy began. The machine is very noisy, and when the treatment starts the only way you can tell it's begun at all is because you hear a clicking sound moving around you repeatedly for about five minutes. No pain. Just a quite a bit of discomfort due to the mask. Really a breeze, compared to chemo.

I think that I must have been under that mask for upwards of 45 minutes on Tuesday. I'm not sure how I kept from freaking out. I did biofeedback, but the mask is so tight that it's very hard to breathe deeply. In the end, I just sang the Grateful Dead song "Althea" over and over in my head. It's a song about a strong, wise, kind woman. I just kept trying to be that. Strong.

Yesterday was much easier. It was probably only 15 minutes total, and it helped that I kind of knew the routine this time. I found that the Pink Floyd song "Fearless" was playing in my head over and over. It was perfect. I also found myself visualizing that I wasn't on the hard platform of the Radiation machine, but that I was laying in the little pool in the Gage Park rose gardens, my body supported by hundreds of purple lotuses. I felt much calmer.

Also, after I asked, Jon (the other kindly radiation tech) showed me exactly where they were radiating. For some reason, that makes me feel a bit better. Not that I have any more control over what's happening to me, but I guess I feel like it gives me more control over myself. I think that's the trick to life: If you can't control what's happening, at least you can control how you react to it. Ah, the wisdom this disease has brought me.

So here I am, a few hours away from treatment #3, and so far I've only had some dry coughing and some shortness of breath. We'll see how the side effects progress.

I'll be singing this again today:

You say the hill's too steep to climb, climbing
You say you'd like to see me try, climbing
You pick the place and I'll choose the time
And I'll climb the hill in my own way
Just wait a while for the right day
And as I rise above the tree-line and the clouds
I look down hearing the sound
Of the things you've said today

Fearlessly the idiot faced the crowd, smiling
Merciless the magistrate turns round, frowning
And who's the fool who wears the crown
No doubt in your own way
And every day is the right day
And as you rise above the fear-lines in his brow
You look down hear the sound of the faces in the crowd...

Radiation Countdown: After this treatment, 14 more to go.

Radiation #1

So here we are. It's finally Tuesday. My first day of radiation.

I'm nervous. I'm not quite sure what to expect. Other patients whose experiences I've read about on the forum call it a "non-event" for the most part. Painless, strange and uncomfortable (being under the bolted down mask and all.) And apparently every treatemnt is very short, as in less than ten minutes. (after this initial one, what with getting details worked out and getting the position perfect, which may take a while.) So I think this may be a bit easier than a two-hour infusion. Have I mentioned lately how freaking happy I am that chemotherapy is over with? I keep thinking I have treatment this Friday, but then I realize that it's done and over with. I keep thinking I'm going to be sick for a week and planning for it like I have the last 8 months, but then I realize I don't have to. *insert huge sigh of relief here*

Well, the sun is shining today, and I think that's a good sign.

"Every little thing's gonna be alright."

You've come a long way, baby

Wow. So yesterday was a whirlwind of information and preparation. My mother and I had a consult with Dr. Koozer, my Radiation Oncologist, and she finally, bluntly, put my odds into terms even an English Major with chemobrain could grasp. Stage IVb, bulky, unfavorable. I was kind of far gone back in August. (and apparently it grew quickly, because my doc uncovered a chest x-ray I got in 2008, and it was clear. Clean. NO CANCER. Whoa.) Anyhoo, chance of relapse is very very real for my case, so Dr. Koozer (and the board of doctors that met yesterday) strongly recommend radiation to my neck and upper chest. (The original and bulkiest sites of disease.)

It really didn't take long after staring at another series of pictures of the huge tumors in my neck and chest and all of the little nodes in my lungs to come to a decision. I've come this far, and I've had an excellent reaction to treatment. So I'm undergoing radiation starting Tuesday, so I can cheat death just a little longer. The doc reminded me that this is no guarantee, but I'm just happy to have made it this far.

So they fitted me with a molded neck brace pillow thingy, (to help keep my chin up and head in position) and then (and this was so cool) they warmed up this clear mesh plastic in warm water and pushed it over my face, head and chest, bolting it down. It slowly cooled and hardened and made a perfect mold of my head position so I can be held in the exact same angle every treatment. As frightening as the prospect is of being immobilized and bolted down to a table as your body is being burned from the inside out, the technology is amazing.

Oh, and I got tiny little dots tattooed on my sides to help them position me exactly the same way every time. They're the size of freckles. Does that mean I'm up to 8 tattoos now? I'm not sure these are big enough to count.

So, yeah. Tuesday. Let's get this party started.

Adventures in PET Scanland

As promised, here are some pictures from my PET scan on Friday.

Picture#1: As you can see, I was thrilled that Dary, my Murse (man-nurse) found a vein. Even if it was in my hand.

Picture #2: The notorious lead-covered syringe containing radioactive sugar goo. (On the left, silly. The one on the right is a saline flush, methinks.) Soooo creepy.

And yes, Dary then proceeded to stick that lead-sheathed syringe into the IV and shoot me up with aforementioned radioactive sucrose. SOOOOOOO creepy.

Picture #3: Now this is cool. This is what you see when you lay down to go into the scanny machine. It's absolutely beautiful. I found myself singing The Doors in my head as I gazed up at it.

"Don't let me die in an automobile, I wanna lie in an open field..."

Picture #4: The PET scan machine. Pretty neat looking, really. I went in head first into that hole there, and everything felt warm. I heard whirring and things spinning around me. The scan felt like it lasted for ten minutes or so, but my Murse told me it was more like 25 minutes. Not unpleasant, except for having to hold the arms-over-the-head position.

So, yeah. Everything went smoothly on Friday. Monday is the big day- I have an office visit with the Onc to go over the results of the scan. Either the cancer is gone or it's still hanging around.

I'm feeling more positive each day.

5/6/10

The nausea continues. As does the fatigue. Although the fatigue isn't a "sleepy" sort, it's more along the lines of "make your body weak but your mind completely awake so you can lay on the couch and contemplate you nausea." (...and now please welcome to the stage: sore mouth and perpetually foggy mind!)

I think maybe I'm just especially impatient this time. I try to keep in mind that I can't be too hard on myself if It's not a perfectly uphill slope from here. I know that I'll have more and more great days, but I know that I'll also have days where I still don't have the strength (or mental clarity) to do what I used to do. I guess this is as good a time as any to learn how to be easy on myself once and a while.

I want to be on a bike ride in the sun. Or a hike. Anything.

Also, I'm definitely feeling some "scanxiety" over my PET scan tomorrow. I feel like a burden on anyone I might ask to go with me, so I think I'm going alone. I know it's silly, and the process is painless and has less (noticeable) side effects than a CT scan, but there's something about getting a radioactive substance injected intravenously that really freaks me out. Not to mention, it might take a miracle (or several dozen tries and a few blow-outs) for anyone to place the IV catheter. I guess there's a little girl inside of me that just wants someone there to hold her hand.

Anyhoo, here's an outline of the process, as I remember it: The nice people down at the CT/PET office have me fill out various sorts of paperwork ("Are you pregnant? Is there any chance you could be pregnant? At all? Are you pregnant and maybe you just forgot? Etc, etc.) Then they explain the procedure and place an IV (easier said than done.) Next they break out a syringe that looks like it's out of a sci-fi movie (complete with a crazy looking lead tube covering the body of the syringe- pictures to follow, hopefully) and inject the radioactive sugar substance to my arm via IV. Next is the boring part. They have me lay back and move as little as possible in a recliner for an hour to let the sugar metabolize. After the hour is up, they lay me down in the scan thingy (gown on, pants at the ankles) and the scan begins. It takes about 15 minutes or so of whirring and spinning things, and then it's done. (See? It's not that big a deal- hence my hesitance in dragging someone along to sit for two hours.)

On the Monday following, I have an appointment with the Onc to go over results. Anything lighting up on the scan= bad news (that means there are quite a few active cancerous cells remaining) Nothing lighting up on the scan= NED (no evidence of disease.) Then we talk about radiation. And remission!

All I want is a clean scan. Please please please.

fin.

Ugh... it's hit me hard and quick today. Very nauseated and crappy feeling. But hopefully, this is the last time I will ever have to feel this way. I am officially DONE with chemo. Thank God/Goddess/Gaia/Buddha/Bill Hicks!

Next up is the PET scan. The kind folks at the hospital tried to get me one at the last minute today, but my veins are tiny and rolly-polly (and now scarred by chemo) so by the time they had stabbed at both arms unsuccessfully, the radioactive juice was no longer active. They were all super sweet, though. They really tried. I always feel so bad for any nurse trying to get a 20g IV catheter into my little, crappy veins. They feel so bad for hurting me, and I feel bad for them feeling bad. They always do their best, and I tell them so. It's not their fault I have dainty little lady veins.

Anyhoo, I'm trying not to think too much about the PET. I start to get nervous about the outcome. I start to worry about getting a "dirty" scan. I know I shouldn't let my mind wander there. It's a waste of time and energy. So I try to focus on the positive, thinking about how far I've come and the tremendous progress I've shown in all of my scans and x-rays so far. I will get a clean scan.

After that, I will probably schedule my radiation consult, and then, start radiation. That all depends on next Wednesday's outcome, when all of the Docs review my case. I still shudder at the thought of radiation. But if it keeps me from ever being hooked up to that chemo pump again, I say radiate the crap out of me.

I'm ready to move on. I'm ready to live again, appreciate life more, help people and be happier than I've ever been.

One day at a time, right?

The next step(s)...

Ok, breakdown has been had, rebuilding is in progress. I'm trying not to think too much.

So here are the next few steps:

On Monday, I will receive my LAST chemotherapy treatment. WHOO HOO!

On Friday, I will receive a PET scan, which will show if I have any active cancer left. As you may imagine, if nothing glows on the scan, I'm considered in remission (pretty much.) If there is any activity... well... Plan B. Let's just not think about Plan B.

The following Monday (May 10th, for those following along) I will have bloodwork and an office visit with the doc to review the scan.

On May 12th, a board of doctors will review my case to see if radiation is necessary. From what my doctor says, they will strongly recommend rads.

After that, I will schedule a consult with the Radiation Oncologist. And then, I assume that radiation will begin. And don't even get me started on how much that idea freaks me out.

Honestly, I'm just very scared right now. I know that everything will be the way it's supposed to be and that I can't look back wondering "what if." I have to move forward, do what I have to do, and just keep breathing.

One day at a time. I know I can beat this.

the drive home

I don't want anyone to see me cry. I want to be strong, but I'm numb. I feel ganged up on and ignorant, but I know it's not like that. I feel like I'm the only one who thinks that radiating my body is a big fucking deal.

Logic steps in and tells me that after all I've been through, the least I could do for myself is see this treatment to the end. Kill every last goddamn cell so I never have to go through this again. Do everything I can to make sure I become a cancer survivor. Finish this so that the last year hasn't been in vain.

I cannot relapse. I cannot do this again.

I guess my decision has already been made.

One word

Remission. Ever since I first understood the word when I was a child, it still seemed so... open-ended. It has always been this word that says "it could come back at any time, but it's not here now." What a strange and unsettling term. And yet, it's the one word that gives me hope for a semi-normal life some day.

4/18/10

Goodness. What to say...

It's beautiful outside, a sunshine daydream, and birds are chirping away and all I can think about is how much my stomach hurts, how I wish I could go on a walk but the fatigue is so bad that if I walk now, I might not get through my shift at the shop tonight. Everyday I try to learn more about radiation and thyroid function and short and long term effects. Everyday I get to the point where I start to cry and I exit out of the window.

It's spring, and all I can think about is how I want to be reborn.

Okay, Sara, let's get on with the positive. I went out Friday night and saw Ani Difranco in Kansas City. The show was amazing. Really beautiful and powerful. Yesterday was the big ReThink Topeka event downtown, and it was so wonderful to walk in the sun and see so many smiling faces. Later, Marty and I and some friends lounged around a fire pit in Kat and Ben's backyard, drinking wine and beer, eating pineapple and other assorted goodies, playing guitar and laughing. It really has been wonderful to be out and doing things this weekend. It makes me feel alive and part of the world again.

God, everything is so beautiful and alive. I keep thinking that I've cheated death twice now, and I'm so grateful to have more time to live. It really makes you look at the little things differently. Actually, it makes it so the little things don't matter at all. Now that's enlightenment.

I also keep thinking about what I want to be when I grow up, (I am nearly a senior now, after 6 years) and I've decided on being that cute, blissed out old lady that has a big grin on her face all the time, and no one knows why. They just know she's figured something out. I know I want to help people and make people's days brighter. I want to make people feel like they are better and happier people, having known me. Other than that, I don't know what I want to be when I grow up. I'm an English major with no ideas on a career. That's nothing new.

Aries

My mother pointed out yesterday that this birthday is a very special one, considering that last August she wasn't sure if I would live long enough to see 24. But here I am, 24 and (nearly) cancer free.What an enlightening, horrible, mind-expanding, incredibly strange year.

Hopefully the nausea and fatigue that's kept me inside since Friday will ease off a bit today and I can get out in the sunshine a bit.

In other news, I finally have to renew my driver's license today. Ha. I've been avoiding it for three years because the picture was so good. At least I can look back at this one and giggle at my stubbly head.

I promise to write more when my mind is working better.

smiling phases, going places

I've been feeling surprisingly alright since the last treatment.

I have energy (sans stamina) and I'm feeling pretty positive. My only issue is that lately, the whole chemobrain situation feels like it's getting worse. I can't remember anything. Seriously. Names, faces, events. Gone. I have to write everything down in lists, and then I lose those lists because I forget where I put them. I have two calenders and I try to put things to remember into my phone with alarms to remind me, but man, this is getting ridiculous. Other things that continue to fade: my vocabulary, my wit, my ability to put thoughts together. I feel like I have the mind of a stoner, but I don't smoke. No fair.

But you know me. I have to find the upside. I like to look at this in from a sort of Buddhist perspective. I'm losing my identity, being stripped down to a more enlightened being. I'm taking away all of the silly little things that make me "Sara" and am becoming this nameless, newborn thing. It's kind of beautiful if you look at it that way.

In other news, my mind is always in the future. The next treatment, the end of treatment, the next PET scan, deciding about radiation. When I'm not thinking about the next step of my treatment, I'm thinking about being somewhere else. I'm blissed out in a cabin in the Colorado mountains, hiking through Oregon, camping among redwoods, on the beach in California, at a Phish concert in Berkeley. I'm not really here most of the time. Ram Das would be appalled.

like bulbs on stems, our faces follow the sun

It's been a good day.

I have a hard time getting to sleep anymore, because I have energy again. That's not to say that I have stamina... I went swimsuit shopping today (I hope to be on a California beach by mid-summer, after all) and found one at the first store I went to. (As a woman, this is an amazing accomplishment!) However, my body feels like I've run a marathon, just after lifting my arms up so many times. My body is absolutely worn out. From maybe one hour of shopping. My mind, however, is buzzing. I went by PT's to practice latte art for a throw down that's going on tomorrow, and I didn't have the arm strength to pour straight. It's definitely cumulatively getting worse.

Anymore, I'm not depressed by it particularly. I'm almost done now. My strength will come back. Slowly but surely, I know I'll be healthy again. And god, I'm looking forward to it.

New Speedway Boogie

"...one way or another, this darkness got to give..."

...and in this case by darkness, I mean nausea. It's been non-stop since I had chemo on Friday, and the pills that used to work don't even seem to touch it. I try not to use the pills if I can help it, due to the side effects- but even when I do break down, they just aren't cutting it. And on top of the constant debilitating nausea, I can't taste anything. Maybe that's a good thing. I don't know. I just want to have the strength and health to get off of the couch and get my life back.

BLEEEEHHH.

**editors note: It has occured to me that I should just shut up and remember that it could always be worse. I am a very very lucky girl.**

Treatment #10

I had treatment today, along with a chest x-ray and office visit. The chest x-ray showed no sign of disease, which is a wonderful, wonderful development. I still have my PET scan in early April to tell me if I'm truly free of active cancer, but just knowing that nothing has been coming back (that the chemo is still working incredibly well) and that things look amazing compared to 6 months ago gives me so much hope.

God, I feel like I'm almost there. TWO MORE TREATMENTS.

At the moment, I'm incredibly nauseated and fatigued, but I'm just sipping water and trying to keep my mind off of it. I'm so incredibly ready to be done. I don't ever want to go through this again. I'm not complaining, I swear. I know that this is all part of the process. I know that I'll be healthy again. I just want to get busy living and never look back. That isn't to say I won't be thinking about this every day- every single day I wake up, I'll understand how lucky I am for this extra time. I want this to push me to be better, to not worry about failure so much and to live a healthier life full of love and happiness and nothing else, because life is short and nothing else matters.

...chemobrain has me rambling.

I guess I just feel that I need to use this experience as a catalyst to live a better life. I think any experience that makes you examine your own mortality can truly change you. You just have to let it be a positive change. No dwelling on things, no unnecessary worrying, no holding back.

Two more to go.

I'm back!

I'm feeling pretty positive today, despite my cold coming back full force. Or maybe it's a sinus infection, because the cold never left... I have no idea. Either way, feeling positive.

I met the barista champion of Canada yesterday, and he told me about his having battled cancer three times. The first two times he went with traditional western medicine, and the last time he went herbal. He's been cancer free for 7 years now.

It was very enlightening to finally meet someone who had been through traditional cancer treatment AND holistic treatment. There are all sorts of people out there who have never had cancer and have no idea what they're talking about telling me how I can cure myself with aloe or hemp oil or coffee enemas, telling me I'm poisoning myself with chemo (DUH.) a despite the fact that the chemo is working. But to actually MEET someone who had tried both approaches and knew what I was going through, gave me so much positivity and hope. He was also very open minded too, telling me to do whatever worked, but to get a hold of him with any questions about the holistic approach. I might just take him up on that.

In other news, the battle with fatigue continues, but I've managed to work a few days this last week, with extensive periods of laying down in between.

I finally feel like there's an end to this battle. In the beginning, when the will to fight was still fresh, it was easier to plow through the treatments. The last few months have been harder. The initial urge to fight fight fight had faded and the light at the end of the tunnel was barely a twinkle. But now, three treatments left, I feel like I'm almost there.

And when I get there, I will have an ice-cold pale ale to celebrate.



Blood test on Monday, Chest x-ray, office visit to check on progress and chemo #10 on Friday. Lets do this.

3/11/10

I don't want to think about it anymore.

I want to shut my mind off and sleep for the next 4 months.

3/10/10

I got a call from St. Francis on Monday evening warning me that my white blood cell count is very low and to come in next Monday for blood work to keep an eye on it. That might explain how completely exhausted I've been. When I first began treatment, a friend of mine (whose mother had been undergoing chemo and rads) told me that the fatigue gets worse and worse throughout treatment. I didn't understand at the time, being so early in the process, how right she was.



I. Am. Tired.



Which is bearable some of the time, because all I seem to do these days (when I'm not working) is read. But dammit, there was a time when I used to go DO things. I guess I just need to quit getting stuck in what was and deal with what is.



Anyhoo. It's looking like I'm going to have to go through with this whole radiation thing. That's on my mind a lot lately, despite my not even being done with chemo yet. On one side of the radiation issue, the "pro", is that I have a greater possibility of remission (pretty much 100% with Hodgkin's Lymphoma) if I go ahead with rads. The "con" side is the long term possibility of hypothyroidism. (They would be radiating my neck and upper chest, therefor exposing my thyroid to radiation.) I like my thyroid. I've been doing a bit of research, and it turns out the thyroid is freaking important. (I know, duh.) It effects everything, most of all your metabolism, energy and memory. I don't want my thyroid to shut down. Poor little thyroid.



But on the other hand, I never want to go through this again. I don't know what I'd do if I relapsed.



My thoughts are running morbid today. I'm hopeful, but scared.



I just want to feel good again.

Sunshine

It's days like this that I almost forget that I'm sick.

I rush out the door without a look in the mirror, and I forget for a while about my mostly-missing eyebrows and my buzzed head, my scars and the port sticking out of my chest. I go to work, and I have my energy and positivity and my smile back. I forget about all of the scans and the bloodwork and words like "relapse" and "remission." I feel human again.

There have been days in this last month where I've given in to negativity and self-pity. I let myself dwell too much in what-ifs and should-I-haves. But right now, today, I feel like I can do this. I feel like I'm back.

Maybe it's the sun. Maybe my white blood cells are finally back up after this last treatment. Who knows. All I know is, I welcome it.

I have some routine labwork tomorrow morning, and then no treatment until March 19th. I'm not sure why they're taking an extra week between the last treatment and the next, but I figure I could use an extra week to play outside and attempt to be social before the next round of "lay in bed crippled by nausea and talk to the cat" for 4 days. On a positive note, only three more treatments left! Whoo hoo!

So, yeah. Despite the fact that I don't actually have enough energy or stamina to go play outside today, despite the swollen knees and mild peripheral neuropathy, I am in good spirits. Great spirits.

To wrap things up: in understanding how quickly life can be taken away, I've come to appreciate every moment more. Life is beautiful today. I'm one lucky girl to have gotten a bit more time to enjoy it.

Here we go...

God help me, I've become a blogger.

That's right, world. Despite my maddeningly uninteresting life, I know there are those of you out there who wonder once and a while how I'm doing. Often, my Facebook statuses make no sense (unless you have the Grateful Dead's catalogue memorized) and more often then not, I only leave my house for coffee or (rarely, these days) live music.

So here it is. I'm starting this for those kind and inquisitive people who care about me and want to know how this whole "cancer treatment" thing is going.

You're all lovely, by the way.

I promise I'll write more tomorrow.