Little Moments

I suppose it was fated that I skipped the finer details of my hospital stays.  Not only did I apparently hallucinate a lot, but my oxygen needs were at one point 8L on an oxymizer.  Milo and my physician questioned my ability to pull through the DVT and PEs.  I survived the first stay to return twice when the new chemo wouldn’t allow me to keep more than water down,

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.


Home With Palliative Care

I’m going to spare the details of two more trips to the hospital for fevers and the inability to tolerate even water.  Apparently, the new chemo may make the tumors “stable” but my quality of life is terrible because of it.  Not that it is great when I’m not on chemo.  It’s all nausea and trying to find foods that are compatible with my stomach, which can change daily.  I still don’t seem to enjoy sweets and my nutrition is so poor my legs are swollen (and sometimes so badly they hurt.)

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.

Finally Time…

I am incredibly sorry that the postings have been sparse, probably full of typos (darn cell phone) and brief at times.  What I can say about the hospital experience is that it is emotionally draining and exhausting.  Day after day I would watch as patients would leave and new patients arrive.  So many came and went that I started to get really emotional.  I’d cry for no apparent reasons.  There are blocks of time, full days even, where I can’t remember what happened.  For instance,  I went to bed on two liters of oxygen one night because my oxygen was low.  When I was next conscious (I can’t say awake since I’m told it was a few days later) I was on an oxymizer (kinda like an oxygen reserve) at six liters.  It turned our the PEs (pulmonary embolisms–or blood clots that travel to the lungs), which formed from DVTs (deep vein thombosis or blood clots) in my right pelvis and knee.  Fortunately the clots in my legs didn’t occlude blood flow so nothing was wrong with my leg thankfully.  I did however have a lot of swelling in both legs, edema so bad at times that it was painful and the skin shined from being so tight.

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!

Still Hospitalized

Since I am using my phone (which I hate) and I am groggy from meds, I am going to make this brief.  I have been mostly hospitalized for the last month.  I am being treated for the blood clots, the cancer and an unknown infection.  I am just so tired of being here, but the four liters of oxygen via oxymizer (it intensifies the oxygen), the weekly draining of fluid and the fevers of unknown origin are keeping me tethered to the hospital.

I want to go home!

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

Quick Update

After a rough night of coughing, Dr. Brooks ordered a CT scan of my chest to confirm the cause of the infiltrates: pneumonia or some inflammation. Either way, he seemed to believe we were treating it appropriately.

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.

“You’re Still Here?”

Earlier this week I heard that comment a lot, which isn’t surprising when you consider I’ve spent the better part of the last three weeks in the hospital.  What started as a simple draining has become much more complicated and now I find myself in bed with oxygen running at two liters per minute just to keep my blood oxygen level where it needs to be (above ninety percent.)

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.

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!