Wednesday, August 1, 2018

Continued non-linearity, in two parts

Part I

Hi everyone!  I deeply apologize for the delay.  I have been exhausted for pretty much the entire month of July, ever since getting off the steroids.  In fact, where I was expecting to feel better daily, I seemed to feel worse daily.  I had fevers and headaches daily, and they were increasing in intensity.  Well, this past Monday, we found out why:  I had an MRI on Monday, and it revealed some super awesome very good news for the long term, and some bummery news for the short term.  Long-term super awesome news:  Lloyd is dead!  There is no blood flow to my former brain tumor, Lloyd, and it has changed in appearance in ways that are consistent with necrosis (death).  Additional awesome long-term news:  no new tumors in there!!!  Huzzah huzzah huzzah!! 

Short-term bummery news:  brain swelling has resumed in a major way!  This news was actually rather pleasant because it explained everything that I've been feeling:  headaches, fevers, exhaustion/fatigue, and even nausea to the point of puking (and I'm not a puker)!  It's also pleasant because it's solvable:  back on the steroids.  Boo!  But, I welcome them at this point, that's how awful I've been feeling.  I'm back up to 12 mgs per day for one week, with a prescribed step-down for a month, and another MRI in a month whilst still being on a few mgs of steroids.  Should be informative!

Apparently it continues to be miraculous that I'm not having seizures.  After the doc asked if I've been having seizures and I said no, he asked if I'm on an antiseizure medication.  I said no, not to my knowledge.  Cool.  I'll go with this no-seizure thing.  Maybe it's because of the mad napping/brain resting skillz that I've developed.  Lots of floating, less striving! 

I puked up my first steroid dose, but now I've had two days of roids.  And today I had only a mild headache and no fever!  Talk about fast-acting!  Thanks, dexamethasone! 

Part II

Now I probably should rewind a bit and explain the previous post about my port removal.  At the time I was in the hospital with no laptop, and it's too hard to blog on a little tiny phone.  So, you got a short poem instead of a long post.  Here is the epic tale of the loss of my beloved port:

At the end of June, when my fevers began, Dr. Oncologist first wanted to rule out an infectious source of the fevers.  I had a chest x-ray (negative), urine test (negative), and two blood draws for culturing bacteria (negative from my arm, POSITIVE from my port after 5 days of growth).  So, because the port culture took sooooo long to grow, Dr. O thought it might be a contaminant of the process rather than a real port contaminant.  But, we repeated the test to confirm.  The office called me after three days of growth to say that the cultures were negative, and we proceeded to head to vacation in northern Minnesota the following day.  HOWEVER, after 4 hours on the road, the office called to tell me that in fact my port culture had grown the same bacterium again overnight!  Noooo!  They wanted me to turn around, go home, wait for my fever to get above 100.5, then go to the emergency room.  But I had already been having fevers above that, so we decided to proceed on vacation.  Then Oncology called back and had changed their minds--they wanted me to come home and go directly to the ER for IV antibiotics.  This made much more sense to me, but I still didn't see the point in returning home.  We were 6 hours away at this point!  SO, I dropped the family off at our amazing vacation spot on Cass Lake, then I drove to Bemidji and checked myself into the ER there.  I told them what was up and asked for IV vancomycin.  They tried to repeat the blood cultures, but my port wouldn't work.  I took that as strong evidence that it needed to be removed.  They admitted me on a Saturday night and I received 3 days of IV vancomycin.  My port was surgically removed on Monday.  Then the doctors wanted to rule out endocarditis, which is an infection in the heart that is readily caused by an infected port.  I first had a transthoracic echocardiogram, which is like an ultrasound of your heart through your chest, and no big deal, but it suggested that my heart MIGHT have been infected!  The results were inconclusive.  So then I had to have a TRANSESOPHOGEAL echocardiogram, or a TEE.  I had to be sedated for this procedure, because, just like it sounds, they put a big old wand down my throat to get up close and personal pictures of my heart.  It was like a colonoscopy, but the opposite.  This procedure was my ticket out of the hospital!  It showed that I did NOT have bacteria colonizing my heart, so no endocarditis.  The family came and picked me up and I joined the vacation on Cass Lake on Tuesday night.  I still got to enjoy 3 glorious days of vacation, during which I still had fevers and felt crummy.  So the infected port was not my entire problem.  But it was likely part of my problem!  While I was in the hospital, Dr. O called to say that my arm blood culture also grew the same bacterium.  So that was now three blood cultures showing the same thing--that's an awful lot of consistency to be a contaminant.  Ooo and fun fact:  my culture was sent to the state hygenic lab, and they determined that it was a species of Proprionibacterium, which is a common skin microbe. Relatives in this genus cause acne, but the one that was in my port is not an acne-causer.  They have been known to cause endocarditis, so whew I dodged a bullet on that one! 

A few other terrible things happened at the end of July, including the death of a beloved family member and the hospitalization of another, but there were also some beautiful things earlier in July.  My dear friend R came to visit, and despite my crummies we had a marvelous time.  We attended the town's 4th of July parade and the fireworks, and played games with the girls.  Then I went to see Hamilton with my dear friend D (I still owe you $ for the ticket, D, I haven't forgotten!).  It was SO good!  I didn't listen to the soundtrack beforehand or anything, so I went in blind.  That was totally the way to go!  I was blown away!!!

IMPORTANT REMINDER:  The Carnation Nation Appreciation Party is coming up on Sunday, August 12th.  2-10 pm, with kid activities from 2-5, and the band rockin from 5-9.  We'll have food, too. Cash bar.  My dad made a beautiful pdf file, but I can't get it to upload.  So, I'm just going to be ghetto and printscreen and paste:

Dude, that's not working either.  Enter powerpoint to transform the printscreen, huzzah!: