Just Reserve me a Room

For over the last week I have attempted to get onto this journal so I could write about the happenings around here.  As we were finally finished with Mayo and moving into new (or possibly just revisiting) territory with Dr. Brooks, thinks were on the move.

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!

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5 thoughts on “Just Reserve me a Room

  1. Carol Spear says:

    Keep fighting, I,ll keep praying.
    Love you
    Aunt Carol

  2. exiledtyke says:

    Am really glad you have some relief from the abdominal pain and that your temperature is back under control. Good luck with the chemo.

  3. I hope you continue to feel better and the chemo works. You’re pretty amazing, if no one has told you that today.

  4. charlotte says:

    I was in awe of ur strength before but after reading ur latest blog well i thing u r AMAZING!! Keep fighting cookie. The fight is worth it for you and everyone who loves u

  5. jdp64 says:

    Please don’t give up. Even though you have other thoughts, we love you and we will keep praying for you.

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