Wednesday, October 8, 2014

Adventures of a Stage IV Cancer Patient

Soooo, it turns out that the feelings of lung improvement (cough, etc) and ability to eat more was a very short-lived phenomena.  :(  It lasted maybe about a week before I started having severe indigestion again.  I always felt full, even if it had been hours or an entire day since I last ate.  One day, I had a donut for breakfast and I swear, I burped that donut the rest of the day!  The most uncomfortable thing was "the growling."  This was happening before and I thought it went away.  But I've figured out that it went away only because I basically stopped eating.  As soon as began eating food again, "the growling" returned.  Danny called this the "bear in my throat."  That's what it sounded like!  Barely audible to others when my mouth was closed, the growling bear was quite embarrassing and rather loud when my mouth was opened, such as during conversation!  Weird!!  So the eating had to stop.  Nothing sounded good, and it felt like nothing was going down.  I struggled to even take in liquids, although liquids went down much easier than any sort of solid food.  More weight loss ensued.

I had also just told my doctor that I thought my coughing had improved, and I was no longer running a low grade fever.  No sooner had I said that, when it all started coming back.  I was having to take a sleep aid, nightly, (which I don't like to do!) just to get some sleep.  It took me a while to "settle down" once I got into bed.  Laying down would induce a lot of coughing and shortness of breath.  I was only comfortable in a very specific position.  Not on either side because I couldn't breathe well.  Not on the back either. Somewhere in between I'd have to find that just right position where all was good.  Then I'd just hope to fall asleep fast and stay asleep all night (thank you, Ambien CR.)

CT scans of the chest, abdomen and pelvis were done, as well as a bone scan.  The 5 days between scans and my doctor appointment were excruciatingly long this time, because I knew it wouldn't be good.  Based on how I was feeling, my hopes of the 2 drugs working had faded.

I gave the nurse and doctor a quick run-down of the symptoms having returned, and of course they noted my additional weight loss.  Dr. C. showed me the CT scan.  The pleural effusion (fluid around the lung) had increased significantly (up from "large" on the previous scan.)  There was so much fluid, in fact, that my lung was squeezed down to a very small version of itself.  There was way more fluid than lung, to say the least!  Additionally, the fluid was pushing my esophagus over to the other side of my chest, actually turning it to a direction it doesn't normally go and causing it to be KINKED!  It was no wonder that I couldn't eat!!  Other findings included enlarging nodules in the lung and new & enlarging nodules in the liver.  :(  But the bone mets were stable ... yay?!

Dr. C. recommended immediate treatment change, preferably to an IV chemo that would work quickly.  She was especially concerned about my weight loss and inability to eat.  She mentioned me having the lung fluid drained (thoracentesis) but recalled that I wasn't too keen on the idea.  Prior to this appointment, Danny & I had discussed that perhaps I should have it done because the coughing had gotten so severe and frequent -- basically non-stop.  I told Dr. C this and she said if I agreed to the thoracentesis, we could go with the previous plan of getting back on Afinitor, this time at a lower dose to try to stave off the mouth sores.  This is the plan we chose.

The thoracentesis was scheduled for the following morning.  I finally took my Mom up on her multiple offers of coming over to help.  I asked if she could come that very evening, and she said of course, dropped everything she was doing and caught a flight from N.O. to Houston.  She's the best!  We definitely needed the help! 

With breast cancer awareness month, our busy season, in full swing at The Pink Ribbon Shop, Danny simply couldn't miss yet another day of work in the same week.  Based on last year's dismal sales, we did not bring in extra staff this year to help with order filling.  It was a rough year of scrimping and saving in every way we could.  We really did not want Danny to have to go get another temporary position in the Spring like last year, so we thought that he and Lisa, our only other employee still with us (thank God for her!) could handle orders if sales were about like the previous year's, ultimately saving us tons in payroll.  However, this year we have been super-blessed with sales through the roof ... which is amazing and awesome and thank you God, but very difficult to manage with a limited staff and my increasingly demanding healthcare needs, not to mention the "normal" demands of a family with three busy, active children.

My mom and I drove the hour to the Woodlands for my thoracentesis appointment.  I had asked Dr. C. about sedation, because I was very afraid of this procedure -- she assured me that I would be sedated.  But this was not to be.  When they took me into the room, I was informed that they don't provide sedation for a thoracentesis, just a local anesthetic.  This really freaked me out!  I briefly considered backing out (and actually told the nurse that I no longer wanted to have it done,) but knew that it was necessary.  I "put on my big girl panties" and agreed to proceed.

I was put in a room, on a stretcher, where I waited for a couple of hours!  Good thing I called my mom in, so I wasn't alone all that time.  We always have fun together.  There was a table in the room that was set up for THE PROCEDURE.  An ultrasound machine was at the bedside.  Nearby there were 2 large glass containers.  I jokingly said to my mom "I bet I can fill those," trying to make light of my scary situation.   At some point it was getting so late that I had my mom go call Danny and others to update them that nothing was happening yet.  While I was left alone, I took the time to pray for God to provide a competent, skilled doctor to perform this invasive procedure that involved placing a needle between my ribs and into my pleural space to drain the fluid.

Eventually they asked my mom to leave and the room seemed to fill with people.  A man, who I assumed was the doctor to perform the "thora" as they called it, walked in and started asking me questions.  He did not introduce himself!  Not cool!  I hate when doctors think they are above me.  You know, doctors put their pants on one leg at a time, just like the rest of us!  So, I asked him if he's ever done this procedure before.  I said it in a joking way, but I'm pretty sure he was shocked.  He was an older gentleman, and Dr. C said he was great, so I didn't doubt that he was very experienced.  Then I said, "What was your name, doctor?"  I tried to keep it light, yet send a message... Hey, you're not God, the least you can do is introduce yourself to your patient.  Maybe he got it, maybe he didn't.  But I tried.

The nurse who originally told me that there would be no sedation stood right in front of me (I was sitting on the side of the bed, legs hanging) and allowed me to hold her hand.  I'm pretty sure I squeezed the life out of it!  I was grateful for her caring attitude and encouraging words.  Before starting, the doc placed the ultrasound transducer on my side/back to take a look at where he would be placing the needle.  He told me that it looked like I had "quite a bit" of fluid in that lung.  He asked if I'd had any shortness of breath.  I said "Only when I DO anything."  He and the nurse talked to me throughout the procedure (well moreso the nurse, but he didn't do too bad!) and so I was kept up with what was happening and what to expect.  The local anesthetic injection stung a little.  Not too bad!  Then he said I'd feel a little pressure, but actually I didn't feel anything.  He then said "Ok, you're draining."  I looked to my side to see one of the glass containers filling with a rust-colored thin liquid.  I didn't even feel the thoracentesis needle!  Woohooooo!

After a minute or two ... not really sure of the time ... I felt an odd sensation just left of my sternum, then I started coughing.  And coughing, and coughing.  They said I could expect this as the fluid was drained and the lung re-expanded.  It was overwhelmingly involuntary and seemed to go on way too long.  The nurse assured me this was normal.  Then they re-checked the fluid level with the ultrasound transducer and, I suppose, concluded that enough was drained out.  The tube was removed.  Being a former nurse, and that I had seen the glass containers beforehand, I was really curious to know just how much fluid was removed.  Even my joke about being able to fill the containers couldn't prepare me for the fact that I actually DID fill both of them.  A total of 1900ml, nearly 2 LITERS of fluid was removed from my left lung.  Oh.  Em.  Gee.

It's no wonder that in the preceding months, I "didn't feel well"!!!

A chest x-ray was done immediately after the thora, per protocol to check for a pneumothorax, a potentially dangerous outcome. To my surprise, they informed me that my lung had not re-expanded, and so they would repeat the chest x-ray after a couple of hours.  I was still coughing some, so that didn't make any sense to me since I was told that the coughing would be due to the lung re-expanding.  In any event, I was to be there on the stretcher for at least another 2 hours.  This turned into 4+ hours because each successive chest x-ray showed the same thing:  failure of my lung to re-expand.  Disappointing!  I was hoping for a big fix with this nasty procedure.

It wasn't until later that evening that I realized that God had answered my prayer ... precisely!  I definitely had a competent, skilled physician who did an excellent job at not hurting me during the procedure, and I had no complications (at least none that could be attributed to his performance.)  I did NOT pray for a super-friendly, down-to-earth doctor who would wow me with his bedside manner.  Interesting!!

My mom drove us home, and I rested the rest of the evening, and I felt pretty good, just kind of worn out from the day's events and stresses.  The next day, I was amazed to discover that the growling, the "bear in my throat," was completely gone!  I speculate that I may have actually "felt" my esophagus straightening out as the pressure of fluid that was displacing it was removed.  I no longer felt like I was full.  It was a definite change for the better, and so quickly, too!  Amazing.

Additionally, laying on my back was no longer uncomfortable.  I didn't feel a pressure on my chest or have difficulty settling into bed and finding a comfortable position.  I was breathing much easier when lying down ... and I could breathe pretty well from ANY position.  Leaning over or bending down to pick up stuff (which, as a mom, I seem to do an awful lot of!) no longer induced a cough.

I still had a cough, which both concerned and disappointed me.  But it had a different quality to it, and overall I felt better.  In fact, after having the pleural effusion "tapped," I realized how BAD I had been feeling for some time.  I guess it came on so gradually, that I had just grown accustomed to it and didn't realize how sick I actually felt.  When you have 2 extra liters of pleural fluid ... it doesn't feel good!  Just sayin'! 

It's been a week since my thoracentesis.  My appetite is improving, and I am able to eat more than before, but I seem to be having trouble gaining any weight.  I FEEL like I am eating a TON, but I'm actually eating small portions.  Small portions of a bigger variety of foods, but small portions nonetheless.  I even went OUT to eat over the weekend.  So delicious!  And so I thought I was done with Boost supplements, but it looks like I still need them.  I finally broke down and ordered the VHC Boost (very high calorie) because as much as I think I am eating, it is still not enough and I am still very thin.  I now weigh less than my teenaged daughters, and it is not a good look, trust me.

My mom stayed in town from Wednesday through Sunday.  During that time, as I said before, we went out to eat, and we also went to watch my girls at the high school football game.  My oldest daughter and her crew also came! Fun!  So thankful for all I'm still able to do, even though I wear out quicker and easier than ever.  Here are some pics from my fab weekend!



I started back on Afinitor (at a reduced dose of 50%) 6 days ago.  Yesterday, I developed a single mouth sore on the inside of my bottom lip.  I'm so scared that they will take over my mouth (and life) again.  And yet, I am hopeful that maybe I'll just have one or two at a time.  Since restarting Afinitor, I've been focusing on excellent and thorough mouth care, ie rinsing and/or brushing after meal and swishing with a baking soda mouthwash to try and nip the mouth sore issue in the bud before it gets out of hand!  Please pray that I can keep it in check so I can continue this treatment ... and that the treatment works!