And then I was released just after my father died.  It is is incredibly difficult to  grieve for your parent when you are fighting  to keep weight on (not accomplished) and your life changes immensely when you are given a box of medications to manage your own pain and nausea.  I haven’t given up on a miracle, but I just couldn’t take being sick anymore.  The suffering was too much and all I wanted was to make it through the holidays and everything else was icing on the cake.  We’re in the cake phase.  I’m enjoying it.

Such as, last night Milo was giving me my a dose of my medications and said something about the monty.  I commented on the full monty and off came his undergarments to Milo’s own twisted dance.  I couldn’t stop laughing and I realized it was little moments like puddle jumping or cooking together whenever we could that I was trying to fight for.  I gave up the chemo so that I could live for all the little moments and memories that make up a  real life.  I’m creating with Milo times so that no matter what happens when he remembers me fondly.

Or as he said finds me irreplaceable.

Because of the multiple trips to the hospital, the loss of my dad two weeks ago and the progression of my disease, Milo and I made the very difficult decision to go onto a palliative care plan that allows me to manage my IV drugs with a nurse and family support while being at home.  I no longer need to rush to the ER if I feel sick.  We’ve cut down on chemo.  Instead of three weeks on and one off, we’re just doing every other week to give me a break.  Dr. Brooks is still trying to get the DNA results from Mayo, which I’m starting to think they are holding hostage.  In the mean time, the hospice gives me the medications I was getting at the hospital so I can be home with my family through the holidays

Because that’s my goal right now, to make it through the holidays.

I put up the best fight I could, but I am so tired and the sick doesn’t seem to be lessening any.  I continue to pray for a miracle to be God’s plan and I am placing my trust in Him, but I don’t know how much more sick I can take.  My body needs a break.

We did only one last paracentesis and removed a full twelve hundred milliliters of fluid.  I had a little relief, but was mostly thankful that it didn’t seem to return and that the swelling in my legs, which had been terrible for about three weeks, was starting to disappear.  Still, I was nervous being in the hospital for so long and started to have panic attacks at night when my family would leave.  I was so scared I’d die in my sleep with no one at my bedside.  The nursing staff, specifically Luly, was amazing.  She hugged me, checked on me often, sat and chatted with me whenever I needed it.

All in all, I had great caregivers.  Every nurse from the med/onc unit were amazing.  They were compassionate, friendly and very understanding; sometimes they cried with me, others they cheered me up.  When I needed meds, they did their best to be prompt.  They have a hard unit to work and I give them props for how well they worked it.  I appreciate them more than they will ever know.  They all helped me make it through the five weeks easily.

Well, as easily as possible.  I definitely was down a lot during the hospitalization.  Lots of sleep, lots of tears and lots of confronting my mortality.  I insisted Milo know how I wanted to die.  I wrote down every password I had for him so he could access my sites and tell people if I grew worse or…whatever.

It took five weeks, but I finally came home on three liters of oxygen.  This means I have a giant compressor quietly hissing away to provide me with oxygen.  It has about fifty feet of tubing so I can walk about anywhere in my apartment.  The swelling in my legs is gone, thankfully because of the diuretics.  I also seem not to have the ascites problem anymore (at least while there is a little it is very little).  My lungs are clearing up, but not back to one hundred percent.  My most recent CT scan (yesterday) shows that I am back to being stable.  No growth, a little shrinkage here and there, a few new little issues I didn’t get to ask about because I received the report after the appointment so next time, but good news: stable.   I used to have stable, but I will totally take it after the growth we’ve had.

So, hopefully that has filled in some of the hospital blanks.  If I could fill in more, I would, but there are definitely days that are missing and blurred together.  That happens in five weeks for sure.

The prayers are being heard and God is showing His power.  Let’s keep praying!

I want to go home!

Prayers, as always, are welcome and appreciated.  I will hopefully write a more detailed experience at a later time.

Unfortunately, we weren’t.  The edema in my legs has been messing with my blood supply. The cramping, coughing and sometimes short of breath feeling has been cause by small blood clots (pulmonary embolists or PEs).  This means I will need to be started on blood thinners, which is one more drug to manage with chemo to survive.

As I literally just received this news, I can say I am numb and have no idea how this will all play out.  I just didn’t know what questions to ask so I asked about cost and length of treatment (indefinitely).  In the morning, after more process time, I will hopefully have more answers…

Please, keep praying.

What changed? Originally, I was staying for another dose of chemo.  My lab draw, however, showed my red blood cell count to be low.  My platelets were “fifty.” short for fifty thousand, which is low.  My hematocrit (percent of red blood cells to carry oxygen), which they like to see over nine, was seven point five.  What this meant was that instead of my normal chemo dose, I’d be treated with the nausea inducing antibiotics and a unit of blood (about five hundred milliliters).

On top of the blood issues, I started running fevers and developed cellulitis at one of the drain site.  This isn’t a huge issue, some IV antibiotics should have done the trick except that I was also receiving chemotherapy.  That meant I would need a longer course of treatment than the average patient.  I was fine with the idea of two weeks –eek!– on oral antibiotics that were making me nauseous until they actually made me physically sick.  Tack on to that a small abscess that we couldn’t drain due to location and size and we were back to the drawing board.  The doctors agreed to put me back on the IV Vancomycin that had been working so well and hopefully that would be the end of that.

I looked forward to going home as I had started feeling better and the IV vanco could be done at Dr. Brook’s office.  Unfortunately, two nights of one hundred degree plus fevers struck.  Clearly, the infection was not as controlled as the doctor had hoped.  Dr. Brooks decided that it was best if I stayed another day or two and we controlled my temperature.  In the mean time, we could do another paracentesis and thoracentesis.  I decided I really wanted my chest drained first because my cough was becoming terrible.  Painful even.  They drained my chest in the morning removing nine hundred milliliters and I felt like I could breathe easier, except for the pain, already.  I was prepared for a day of catching up to the pain, that was my experience from the previous time, but this time seemed different.  It took almost all night to get even slight control over the pain (and even now it sometimes hurts when I breathe).  When the cough didn’t appear to improve, Dr. Brooks decided to have a second chest x-ray done to look for a pneumothroax (collapsed lung).

Good news: the lung is fine.

Bad news: it looks like I have developed pneumonia and will be on more IV antibiotics and spend a bit more time in the hospital.  I’m getting insanely tired of being in the hospital, even if the care has been so amazing.  My nurses have been attentive and kind; I can’t complain about a single one of them.  Still, I want to get home and back to finding a flow to things.  I’m also really scared.  What if I go home and get worse again?  What if this is the end?  I was starting to believe that the abraxane (especially now that it is going to be covered outpatient and we won’t need to pay for it!) was going to be our cure, if not at least a step towards it.  But in three weeks I’ve gone from hanging out with friends, going to soccer games and the mall to being mostly bed bound, walking the hospital floor, having swollen legs and abdomen and coughing so terribly the nursing staff looks concerned.  I don’t feel better.  I feel worse and it’s getting me down.

So folks, I ask that you keep praying.  I also appreciate the messages of love and support.  Thank you for the flowers and phone calls.  Please don’t stop getting in touch with me and letting me know what you are  thinking.  It boosts my morale and I need it.  I think we all do right now.

They just weren’t moving fast enough.

Our last day up at Mayo had been a Monday/Tuesday combo.  Milo and I met with Dr. Borad Monday, who really had nothing to offer but some advice to return to the routine of cisplatin and gemzar (my first set of chemo treatments) and hope that his trial drug would have weakened the matrix.  This wasn’t optimal news, but not needing to drive to Phoenix twice a week for treatments and tests sounded wonderful.  It doesn’t sound like a lot, but that commute is tiring on an ill body.  I’d miss the staff up there (Heather is a hoot) but otherwise I was definitely looking forward to returning to Dr. Brooks and Carla.

Tuesday they had checked out my heart on the echocardiogram and once again told me it was accelerated but healthy.  I was finally free from Mayo and my care turned back over to Dr. Brooks.  I wasn’t completely done questioning Dr. Borad: what about the pressure in my abdomen?  What about the tumors getting worse?  Why was I having a harder time eating?  Should we look into surgery and specialists?

While Dr. Borad didn’t seem to have these answers for me, Dr.Brooks did.  He scheduled an appointment for that Friday and we were going to set a plan of action.  We were going to get aggressive and find new help if we needed to.  It was time to charge ahead.

Unfortunately, I ended up on the phone with him in the Emergency room room at eleven at night.  My abdominal pain was out of control.  I was so bloated, Milo thought I looked at least six months pregnant.  I had trouble breathing.  I just couldn’t take it.  To make matters worse, in attempt to control my pain I would take my narcotics but the pain and pressure in my abdomen was so terrible that I couldn’t keep it down.  I hadn’t eaten in two days.  It was just horrible.

Dr. Brooks decided I needed to be admitted to the hospital to control my pain and possibly relieve the pressure in my abdomen and chest.
That Friday, they removed ascities from my abdomen via a paracentesis.  This is where the skin and tissue beneath is numbed with lidocaine (much like the start of a biopsy) and then a small incision is made to put a suction tube into the pocket of fluid.  The tube connects to a vacuum-jar and it drains the pocket a liter at a time.  They switch vacuum-jars until they can no longer drain fluid or have reached a maximum of five liters (especially on a first timer).

My first time they removed three and the relief was immediate.  I have never felt so much better so quickly.  I could breathe a little better; I could eat better.  My abdomen didn’t hurt.  For three weeks at Mayo I had complained about increased swelling and bloating and they did nothing.  That entire time I was carrying nearly ten pounds of water in my stomach against my diaphragm!

At midnight on Friday, they started started my first chemo: abraxane and gemzar.  Now, you might recall we’ve been recommended to use abraxane before but hadn’t because the insurance company refuses to pay for it and I had gotten into the clinical trial.  Dr. Brooks, however, feels that we need to use this drug and worked out something with the hospital where the doses here might not be as painful as if we paid through his office so long as I was admitted.  So, we went ahead –albeit reluctantly on my part– with the first dose.  I stayed until Sunday morning to be monitored for effects from the paracentesis and chemo.  I was so determined to go home that I ignored the little voice in my head that said I wasn’t ready, especially as everyone else said I was fine.  I ignored the fact that I felt as if I might be feverish.  I just ignored my instincts.

Huge mistake.

Two hours after getting home, my temperature was nearly one-hundred-and-two.  I was again vomiting.  The pressure was back, but not as excruciating as it had been just two days prior in the ER.  That night it had been so bad I was pacing and crying in the ER, but on Sunday it was at least tolerable.  Dr. Brooks asked if I could make it until Thursday; he’d call in some antibiotics and then I could go be tapped again.  I didn’t think I was going to make it that long and requested he just readmit me.  He did.

I continued to run temps over a hundred for the entire week and infectious disease joined the case looking for some kind of infection I might have developed from the hospital.  My lab work, despite the fevers, looked fine so the doctors couldn’t find a source of the infection.  In the mean time, they opted to treat my symptoms and keep me as comfortable as possible.  This meant two more paracenteses and a thoracentesis, or fluid removal from the pleural space around the lung.  The numbers were two point two liters the first time, two point three liters the second time and seven hundred milliliters from my lungs.  That means, just last week alone, eight point two liters of fluid were removed from my chest and abdomen for a total of about sixteen pounds.  No wonder I was uncomfortable!  Dr. Brooks decided I needed to try a routine of diuretics (“water pills”) to possibly staunch to build up of the ascities while we pray this chemo works.  My new morning pill count is nine, I swear.

For the rest of the visit they kept me on IV antibiotics and the decided to keep me for my second chemo dose.  Dr. Brooks assumed if my fevers were gone (and they had appeared to be), I tolerated my chemo and I had all my antibiotic doses, I could go home and should be ready for outpatient treatments at his office starting this week.  I was very much looking forward to things returning to some kind of normal…

Then Sunday, I woke with a temperature of one hundred-and-two.  I was heartbroken, but determined this wouldn’t get me down.  We tried medication and cool compresses.  Dr. Brooks prescribed some oral antibiotics in case I needed those.  I pushed along through the day, though it felt as if none of my medications were settling and everything I tried to eat just sat like a rock in my stomach. Before long, I was calling Dr. Brook’s office to get the night on call (it was two am and I wasn’t going to wake the poor man if I didn’t have to.)  The on call: Dr. Brooks.  He called me back and I explained the continuing fever, the inability to keep medication down and control my pain and, worse yet, a huge red inflamed area on my left side that was tender to the touch.

And I was admitted again with cellulitis.

I’m still here being treated with IV antibiotics for the cellulitis, but my fevers appear to have broken.  I have some nausea but that can be a combination of things: strong IV antibiotics, narcotics, hospital food and my cancer in general.  I get some sleep, just not much…so I look forward to my own bed.  I am, however, very concerned about the chemo.  Don’t get me wrong, I’m all for being full steam ahead now (heck, haven’t I been asking for that for months?) but I’d hate for the drug to work and have no means of accessing it.

I apologize again for being MIA.  I hope my adventures in the white wall playground at least buys me some leave.  Feel free to hit me up with anything that was unclear.  I wrote this at five am and then my nurse decided to give me some diluadid because I was hurting.  I’m lucky there are words on this page at all!

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.

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!

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.