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.

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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)