Happy (?) Anniversary

While it was over a year ago that I started showing symptoms, it was exactly one year ago today that I received the phone call from Dr. K confirming my biggest fear:

I have cancer.

I’ve uttered that sentence thousands of times since last August and I still can’t seem to believe it.  There are moments it seems like a nightmare, like it’s surreal and any moment someone will tell me it has been some cruel joke or that I can wake up now.  I know that isn’t going to happen and the truth remains that I do have cancer…

And it has been getting worse.

I am no longer a lab rat, at least not at Mayo Clinic.  My last CT scan shows some mild ascities in the upper abdomen, a left pleural effusion and growth in the largest tumor (the one in my liver).  I’ve noticed that I am using my narcotics more liberally, there’s been some swelling in my legs and I’m tired often.  I definitely feel as if my quality of life is changing and when they told me that I was coming off the trial, I cried.  I really hoped that the drug would have worked on my tumors.

Now, it might have.  One of the results they were trying to study is would the PEGPH drug change the matrix of the tumor and make it more susceptible to chemo.  This is what we start testing this week back with Dr. Brooks.  I will be going back on the cisplatin and gemzar (I’m so not excited about this) and we’ll be doing doses of that while exploring other options: like specialists around the country and maybe I can finally convince them of some surgery.  I’ve been insanely uncomfortable with the pressure in my abdomen; I can’t imagine not doing something.

I reflect back on the last year and it has been…so strange.  Everything before cancer feels like a hundred years and another person ago.  Milo will caress my stomach when I’m in pain and I’ll have the fleeting thought of, “But he’s supposed to do that when I’m pregnant, not growing tumors.”  But trying to conceive babies and planning trips, that seems like another couple so long ago.  Was it really just about a year ago that we were doing those things?  Was I really a soccer player then?  Was it really just a few months ago that I was working twelve hour shifts as a nurse?

So, for someone statistics said shouldn’t have lasted this long, I say Ha!  I am going to keep pushing through as best I can, I don’t know how to do anything else just yet.  Even on the really horrible days, when I want nothing more than for this to end so I can stop suffering, I can’t seem to give up.  Deep down, I am not ready and have not accepted death.  Until then, I press on and pray for a miracle.


Kelly Clarkson!

So for the first time ever I am going to post something to this blog that isn’t entirely cancer related.

I have been a huge Kelly Clarkson fan since she crooned her first notes on American Idol.  She just came across as sweet and homey.  The kind of person you hung out with and told dorky jokes to.  Her voice was incredible, even when fighting a cold, and I couldn’t help wanting her to win.  It was the only season of American Idol I voted during and she is the only idol that I own every album for (and have attended every concert in my home state).

When she went on her Stronger tour in the winter, she skipped Arizona.  I had been tempted to follow her to Denver, where I had friends, or even California for a road trip.  But I was in treatment and trying to work, so scheduling a trip to see Kelly was a little complicated.  I missed the tour, which broke my heart since I so loved her new album and used Strong, as well as The Sun Will Rise, as my anthems to get through bad days from chemo and cancer (okay, maybe this post will have a little cancer in it.)

Then, I heard tale that Kelly would be touring this summer with the Fray.  While not a huge Fray fan, hearing that she was on the road again was enough to make me sit through any other group to see her.  I think I even would have sat through the Jonas Brothers if it meant seeing Kelly.  Imagine my glee when I received my pre-sale code for being a fan club member.  Now, multiply that by a billion when I somehow managed to obtain third row center seats during that pre-sale.

You read that right.  Last night Malika, Tawnya, Tawsha and I had third row center seats to one Miss Kelly Clarkson.  These seats were so close we could almost touch her…

But we’ll get back to that.

We went up to the concert early to see if there were any radio stations giving way meet and greet passes.  I’ve met Kelly twice before, both times with passes I won from the fan club.  In fact, the first time I met Kelly was with a very young (twelve-year-old) Tawsha at my side.  She was my student then, I was teaching fifth and sixth grade, but her mom and I had become insanely close and did things like attended concerts and saw movies together.  Tawsha was a shy little thing and barely said to words to Kelly, but I have a photo of the three of us smiling at the camera as I met my American Idol.

I would meet Kelly again a few years later with another pass won online.

This year, however, they changed the rules to win passes.  It wasn’t a straight raffle, you had to earn points for your raffle ticket and the points required were just too many for me to earn in such a short amount of time.  Pretty much, they were making it so dedicated fans (those that spent tons of time on Kelly’s fan page buying things or watching videos, etc) would be able to win the passes.  While fair, for those of us with other things on our plates, like fighting cancer, it becomes a challenge to earn the right to be in the raffle.  I didn’t even bother to try to get the points, I just hoped there would be another way.

After four rounds of Kelly trivia with a radio station, Tawsha and I both had managed to come in second and miss out on the passes by one question.  They had one pass left and I tried all my might to get it.  I pointed out that I gave them the correct answers to the false questions.  I told them I had cancer and showed them my scars.  I had just about convinced the DJs that I should have the ticket when their manager decided to do a raffle.  We didn’t win the raffle (and the guilt ridden manager later tried to upgrade our seats only to see that our seats were better than his.)

For some reason, I was devastated.  I had really wanted to talk to Kelly and tell her what her new album had done for me.  I had a song request I had hoped she’d play (she unfortunately didn’t).  I just needed to see her.

Malika, Tawnya, and I were still determined.  We found the tour manager and tried that route: no go.  However, someone in line overheard our story and sold us her two back stage passes so we could meet Kelly.  I literally broke down and cried…and took the passes gratefully.  It was cheating, but I was going to see Kelly one more time.  I did tell her how much Stronger and The Sun Will Rise meant to me.  I told her I had stage four cancer that was inoperable and I currently am being treated for it.  She told me her friend just finished radiation and she wouldn’t wish cancer on anyone, even the few people she hated.  She told me God bless, she’d pray and that she would do her best to fit The Sun Will Rise in, but she couldn’t make any promises.  There were hugs and photos and some tears.  It was definitely a great experience (and I think even better than the first two times!)

What they didn’t tell me: the meet and greet took place down three flights of stairs in a practice room.  Going down, not a huge deal.  Going back up: well, all I can say is thank God for Tawsha going with me.  She made sure I didn’t fall, let me practically crawl up the stairs and stayed with me while I huffed and puffed and coughed.  If I had gone down alone, I think I might still be sitting on the steps.

When we finally made it back to the top, I bought the biggest bottle of water I could find and then we headed for our seats.  As we were walking, however, my left calf cramped so bad and so incessantly for five minutes that I couldn’t walk.  I knew our seats were on the stadium floor (the arena is normally used for basketball) so more steps were in my future.  This wasn’t working in my favor and I started to cry.  Literally, in the middle of the hall I looked up and said “I let it take my job.  I let it take my soccer team.  I will not let it take tonight.  Tonight is mine and I am going to see her sing!  I am having fun tonight!”

The cramp stopped, the pain lingered and Tawsha arrived with a wheel chair and a courtesy desk person to wheel me to my seat.

Now, we can talk about the amazing seats.

Literally, third row center.  For the majority of the show we could watch her without issue (she did get off stage once to go to a second stage in the back for a while, but that lasted about half a song).  She caught my eye and waved several times.  She remembered me.  It was special and magical…

And then came the final number: Stronger.

Do you know what happened next?  Kelly Clarkson, my favorite musical artist, stood in the center of the stage and sang the chorus of Stronger to me.

Seriously, I’m not making this up or imagining it.  She locked eyes with me and together we sang Stronger.  It was as if Kelly was telling me not to give up, to keep fighting.

Best. Moment. Ever.

I’ve been to many concerts, had lots of cool experiences, but I can’t think of a single non-Milo related moment that tops this one.  I sang with Kelly Clarkson.  We sang to each other.  Best yet, we sang my anthem!

And last night, I finally slept a full nights sleep.

Take that, cancer.  Score one for me!

Bad Night

I’m posting this at two a.m, local time because I’m awake.  For a few weeks, this was a fairly common occurrence. I would find it impossible to get comfortable and would sit up waiting for some medication or other to kick in.  Last week, however, Milo and my chemo nurse Heather ratted me out to the nurse practitioner and she changed my medications.  I’m not just taking oxycodone for pain; I am also taking oxycontin (a long acting oxycodone) every twelve hours in hope of starving off the pain.  This started after a dose of IV dilaudid that worked so beautifully at getting rid of my pain that I was flying.  It was the first time I had been truly comfortable in months

For the first few days, the twice a day oxycontin worked so well that I didn’t need anything else.  Friday, however, I needed more break through medication (oxycodone) that I have in a while.  I was having a really bad pain day.  This, unfortunately, lapped into the weekend and I not only needed the oxycodone, but drugs to help me have normal bowel movements because oxycodone constipates.  The pressure in my abdomen has been so bad all weekend that I have been near tears several times.  This causes a vicious cycle of using narcotics to treat the pain in my abdomen but then needing something to make the pressure go away.

Today, it was just terrible.  I felt like nothing was digesting and my pills weren’t working at all.  The pain increased despite taking both my long and short acting drugs.  By one, I was in tears and Milo woke to find me clutching a heating pad to my stomach begging God to take the pain away.  He was seconds away from dragging me to the emergency room when I vomited up everything from lunch on.  No wonder nothing was working!

Later today, I’m off to Mayo to have a CT scan and find out if we’re continuing the clinical trial or changing to something else.  I want to talk to them about a few things I’ve found out recently, especially since I have now met three women with the same cancer I have that were all stage four.  One is cancer free for three years after a transplant and surgery.  I want to know why this is supposedly not an option for me when there are others out there being treated with it.  I want a chance and I’m starting to feel like they are withholding it!

Here’s hoping I get some sleep and some answers today.  I’m not sure how much more I can take.

Reporting From the Well

Sometimes I feel as if I am sitting at the bottom of a well, the muck deep around me.  There isn’t much water, just damp earth and no way out.  I can see the blue of the sky, hear people laughing and talking.  Do they even know I am down here?

Then the rain begins to fall.

I think a therapist might say I am depressed.  I’d like to see him/her deal with terminal cancer.

Most days I can stay fairly optimistic, especially if I manage to get some sleep.  Unfortunately, sleep is fleeting lately.  For instance, last night I had about two hours before the pain was so bad I woke crying.  After that, I dozed for about thirty minutes only to wake from a dream where Milo was attempting to rape me (no, clearly the lack of that kind of intimacy thanks to the cancer isn’t affecting me at all!)  When I woke that second time, the pain was still bad and I could only sleep sitting up, which required that I sleep on the couch.  I maybe had two more hours.

So, yea, emotional today.

Probably doesn’t help that they told me the port isn’t causing the heart problems or that I keep hearing that I need a miracle to survive.

I hate cancer.

I’ve returned to writing fiction when I am home during the day, but some people have suggested I tell my story in a novel.  Anyone interested in learning about the chubby kid picked last who eventually grew into the chubby girl with cancer?

Sounds like a laugh a minute, no?

Lab Rat Five Checking In

The clinical trial I am part of is divided into four week sessions called cycles.  Cycle one consisted of twice a week dosing with the drug: Tuesdays and Fridays.  I hated driving to Scottsdale twice a week to be treated.  I’m really not comfortable in the car for extended periods of time right now, though I often found napping a good way to spend the trip.  Still, losing twice a week to long car rides and days running around the Mayo Clinic building wasn’t really the way I wanted my weeks to go.  Especially when some of those days stated at seven in the morning and had me home around five in the evening.  There were three PET scans, a CT scan, two echocardiograms and several doses of the drug.  The worst part had to be the dexamethasone I was expected to take with the drug.  At first, I didn’t seem to have any side effects from the dex (which is a steroid) or the drug…

And then week four happened.

Not only was I completely unable to get more than a few hours of sleep each nice (thanks dex!) but the joint pain they warned me about started.  First in my hips, then in my hands.  Last weekend, I found typing a challenge, not that it stopped me.  I was really disappointed that the side effects started, even though it gave me some hope the drug was working.

Cycle two started this past Tuesday.  I met with the nurse practitioner working with Dr. Borad and she reviewed the most recent of the PET scans.  We are, once again, calling my cancer stable.  I hate that word.  No new growth since I started the trial, no shrinkage.  Either way, there is still a lot of cancer in my body.  If I wasn’t finding it difficult to eat certain foods (no more red meat or grease for me) and if the pain some days didn’t make me burst into tears, maybe I’d be happier with the word stable.  Since I am in pain and I do feel sick so often, and very tired thanks to the lack of sleep, I am not content with stable.  I want results.

I want, and pray for, a miracle.

The only good thing that really came out of Tuesday, besides the lack of growth and the now once a week treatment, is that we finally have a cause for my out of control heart rate and can do something about it.  My heart rate, since the cancer, has steadily climbed.  My pulse was once solidly in the seventies.  When I was on the chemo treatments with Dr. Brooks, it would spike into the eighties.  Since my lung biopsy, however, it never drops below ninety, which is really pretty high.  We always assumed it was pain or my coughing fits, which are ever so pleasant and show no signs of stopping.  On Tuesday, though, the echo tech was showing me my heart and pointed out that the tip of my port-a-cath is actually inside the right atrium, the upper right chamber of my heart.  It wasn’t originally, nor should it be.  It was supposed to be in the vena cava, which is the vein that leads back to the heart.  Back in May, before my biopsy, there is a chest x-ray that shows it was in place.  It isn’t anymore.

So now I have to meet with a vascular surgeon to see about having it pulled back slightly.  The tip could be hitting my heart in a way that it causes the high heart rate.  At least this should be an easy fix.

Now, if only we could get rid of the cancer.

Three more weeks and we should be deciding if we continue the trial or start a different round of chemotherapy.  I’m nervous.  I really want them to find something that works.  I want my life back.  I’m tired of being sick and weak all the time.  I miss working and being part of things.  Even when we do go out and spend time with friends, I can’t stay long because I get so drained.  It’s not a very exciting way to live.

Nor is waiting to hear back from the disability people or the company that controls my COBRA.  Everything is very much hanging in the balance right now.  Is there any way to take a vacation from all of this?

Bring On The Rain

I wish I had more to tell you about the clinical trial, but there really isn’t much to say.  Friday will be the last Friday I attend before I become a once a week patient.  Then, I will trek up to Scottsdale every Tuesday for blood work and the drug before coming home.  At the end of that four weeks, I will have another CT scan to see if the tumors have shrunk any.  So far, my PET scans post drug week one do not show any changes.  In fact, one of the scans showed that the tumors are officially into my pelvis and that large, almost grapefruit sized tumors are wrapped around my ovaries.  My pain, thankfully, is mostly tolerable, but the news is not what I want to hear.  Staying positive is a challenge.

Tonight, I was completing my usual prayers; beseeching God to let me have a miracle, even if I know there are probably so many people who deserve one more than me.  I had started to cry, which happens often when I pray or think about cancer in general.  I had just finished thanking God for my blessings –Milo, my friends and family, the good days sprinkled among the bad– when I heard it.  The gentle patter of rain on the window.  It was soft at first, but I could hear it start to fall harder and I perked up.

I love rain.

I love water in general: watching the waves at the ocean, the sounds and smells of rain falling or waves crashing on the shore, even tracing the tracks of the rain drops on window panes.  I’ve always been drawn to the water: it gives life and renews.  When the rain finishes, it always smells so clean and pure outside for a while.  It’s like a giant eraser.

Before I could stop myself, I was padding to the door in nothing but the over-sized ratty t-shirt I had stolen from Milo, my undies and a pair of flip flops.  I cracked the door, watched the pouring rain, took a deep breath…

And stepped outside.

The air was cooler, the water felt amazing on my skin.  I stood, eyes closed and face towards the sky letting the rain mix with my tears.  And then I twirled.  I spun slowly and just let the water run over me, cold as I was.  Clean me.  I thought.  Heal me.

I didn’t stay out long, a cancer patient with pneumonia is not a good thing, but I enjoyed it.  Even now, as I finish this blog I am listening to the rain and thunder considering a second trek to play in the rain.  I don’t want this to be my last storm to play in.  I don’t want to miss it.  Or a good puddle to jump in later.  I want there to be years of quirky things like this for me ahead (especially when they surprise poor Milo who came out of the office to find me soaking wet in the hallway).

Some days, I find I am losing hope and running on fumes.  It isn’t easy to stay positive when people keep reminding you how monumental it would be for you to beat what you have.  I hear the subtext: if you had caught it sooner, if it was a different cancer, if…if…if..

I keep pushing through the best I can, but I feel like we’re reaching my limits.  How much more am I expected to take?

I’m not sure, but tonight I am thankful for the rain.  Bring it on.

(For a great music video by one of my favorite artists, check out: http://youtu.be/xWYRfsjBNQk)

Adventures of The Traveling Lab Rat

First, I need to thank some people in my life for being really incredible to this lab rat last week: Deb, who provided a place to stay and food to me and my parents when we were required to stay a full week in Scottsdale for Mayo appointments; my parents, who chauffeured me around Scottsdale from Tucson; and my monkey, who came to visit me while I was away from him for the first time since…well, we started dating.  Milo and I have always spent some time together daily, even if it was just before bed, since we became a true couple.  It was exceedingly difficult to be away from him for days at a time and I hope that never happens again.

The week at Mayo was trying in more ways than being away from home.  There were long days of fasting for PET scans and CT scans, which I’ve already admitted to hating violently.  Really, how good can it be to send a drug through my system that sets my body on fire?  I hate CT contrast with a passion and not being to eat when you already have stomach and weight issues is just cruel.  Two days with afternoon fasting-necessary scans was just a lot and I know I cried often because of the stress.  Most of the week wasn’t so bad: blood work, doctor’s appointments and two treatments (Tuesday and Friday) with the drug, which is dissolved into ten milliliters of water in a syringe and pushed through my port-a-cath over five minutes.  Before each treatment they draw blood and get a urine sample.  Sometimes they do blood work after the treatment too.  On the first treatment day, they did several labs before my afternoon PET scan and thankfully they can draw them all from my port so I don’t have to be stuck too often.  I’d like to have some veins left when all is said and done.

Overall, the lab rat experience is weird.  I don’t really see a doctor or lab results as often as I did with Dr. Brooks.  Mostly, I see a chemo nurse, who gives me the drug, and the nurse researcher, who asks about my symptoms.  I actually haven’t had any of the expected side effects from the drug; other patients were reporting arthritic pains.  I haven’t had that at all, but I have been nauseous and vomiting again; we’ve decided that’s the cancer and not the drug, however, since it started before the trial.  I am down in weight, lower than I was last year when I was first diagnosed and dropped weight and even lower than when I was dieting and exercising.  It concerns me because I have been trying to eat and calorie load to keep some weight on.  Dr. Brook’s words of “stable disease means I don’t watch you waste away” haunts me every time the numbers drop on the scale.

Speaking of the good doctor, he actually called to check on me Friday.  He wanted me to know he prays daily for my miracle and wants me to keep in touch with him no matter what I need.  It means a lot that a doctor went out of his way to call, to insist I keep texting him, to pray for me and all that after he handed my care over to someone else because he ran out of options.  It says a lot about his character and I couldn’t have asked for a better oncologist through all this.

One last thank you to Deb’s friend, Jocelyn, who was kind enough to do some reflexology work on me.  Jocelyn is a survivor too and talking to her during my treatment was probably the best part of my week.  She really seemed to understand me in a way no one else has and I felt bonded to her instantly.  One thing she said resonated with me most and helped me feel much clearer: “Remember, whether you live or die, you are going to be okay.”  It’s true.  I don’t really deal with the aftermath if I don’t get my miracle, though I will so that’s moot (power of positive thinking!)  Surviving may mean dealing with infertility (good, I didn’t want to pass on cancer genes anyway!) and always carrying around the black cloud of cancer (because I will be tested for it often for the rest of my life), but I survived.  So I’m still here to go about my life knowing I made it.  I will be okay.

I will also continue to currently be a lab rat.  Twice a week for the foreseeable future.