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.