Monday, November 11, 2019

my Halloween was all tricks no treats

A few days before Halloween I completely weaned off the steroids, but then the withdrawl symptoms kicked in: nausea, chills, and at one of my ordinary appointments with Dr. Oncologist she caught me with a fever of 100.7  She claimed that fevers are not a normal part of the dexamethasone withdrawl symptoms, so she admitted me to the hospital with a fever of unknown origin; I had a chest x-ray and a Ct scan to explore whether or not I had an infection lurking in my body.  I did not.  I almost had an MRI, too, but Bob from transport saved me from it by being the first person to ask me if I had any metal or shunts in my body.  I said why yes Bob (I have a ventricle shunt that needs to be reset after an MRI). So instead of tranporting me down to MRI he left my room to bring the shunt news to the doctors on my behalf.  I heart Bob from transport!

I did have an MRI in Iowa City recently, which suggested that Neil is dead, and Lloyd's shoreline is angry/inflamed.

Wednesday, October 23, 2019

muscle difficulties

I accidentally overdid my upper body physical therapy last week.  My left arm is currently a cooked noodle; I can't raise it up.  I have DOMS (delayed onset muscle soreness), in my left rotator cuff apparently.  Fortunately I use my cane with my right hand, so it's only been a minor inconvenience.  And just a bit painful.  Sister Holly massaged it for me, and that helped a lot. 

In the house now I primarily use a cane rather than a walker.  For walks around the neighborhood I still prefer to use the walker for now because there are lots of sticks and other tripping hazards.

I'm down to 1 mg of dexamethasone per day.  Feeling fine, eating fine.  On Sunday I will start zero mgs of dex.

What other story lines do I have for updates?  I turn 39 years old tomorrow!  I feel so lucky to have made it to 39.  When I was diagnosed with inflammatory breast cancer in October 2010, the 5- year survival rate was only 50%.  I'm old!  My goal has always been to make it at least to 40; I'm close! Lloyd is trying to keep me from 40, but just maybe I'll make it after all.     

Friday, October 11, 2019

Great strides

Sorry it's been so long.  I've been elecronically challenged--not wanting to deal with electronics.  That's my poor excuse for any concern I may have caused you in my blog absence.

And there have been a few shenanigans, including ANOTHER ambulance ride to Iowa City (with the same paramedics, who remembered me although I didn't remember them).  So what was this ambulance ride about?  Well, I can't tell you precisely what dose of steroids I was on after the ventricle shunt surgery, but it was quite a bit.  Maybe 8 mg per day or something in that ball park?  My spouse was managing  my dose for me because I was in no condition to manage my own meds.
As per doctor's orders, we stepped down the dose on a schedule.  Well, as soon as we tried to step down the steroid dose, I stopped being able to keep food down.  I was puking on my plate during dinner!  It was terrible, and horrifying for the children.  So, we called Dr. Oncologist.  She said to go to the ER and get checked out.  So we did.  And many images were taken (they have a specific phrase for this bundle of images, called a shunt-o-gram) to make sure that my shunt wasn't local ER wondered if my shunt was working too well, so hence the ambulance ride to Iowa City, where the shunt experts are.  (Although steroid withdrawl seemed to me the simplest explanation for the puking.)  The shunt experts concluded that my shunt was in perfect order and steroid withdrawl must be the cause of my nausea.  Huzzah for no problems with the shunt.  So--they upped my steroid dose for no medical reason other than Comfort, which counts for something in my book.  Now I'm on 3 mgs per day until Sunday, when I'll try to go down to 2 mgs per day.  And we're going to do an early morning blood draw to check on my body's ability to make cortisol after I wean completely off the roids.  Data!  :)

Other than these shenanigans, I'm doing quite awesomely.  Slowly getting my balance back with a bit of leg strength, I still have a physical therapist and an occupational therapist coming to my house twice each per week.  I made granola with my OT this week.  We have a low counter in our kitchen, so I can sit in a desk chair and do stuff at the low counter without anyone worrying about me falling over.  I still don't do any chopping, though, because I'm on a blood thinner and so really can't get cut right now.  I'm on the blood thinner for a blood clot in my leg that was discovered when I was hospitalized for shunt surgery.  My leg had swollen up like a club! So someone did an ultrasound of my leg while I was under I guess.  I have a clot in a femoral blood vessel = blood thinners.

Another thing I can do is cook using my Instapot!  I don't feel safe running the stove yet (because balance checks! I still need two hands on the walker.) But I can cook in my instapot.  Yesterday I made minestrone (recipe here) and it was wonderful.  I have a bladeless chopping device to ensure no injuries to myself.
Image result for oxo food chopper
I feel as though my biggest challenge as yet is getting back on top of  my cognitive game.  Everyone says I'm getting better, so I'm moving in the right direction.  But I still struggle when there's more than one thing going on, and it exhausts me.  So I continue to be patient with the mysteries of brain healing.  I finished an afghan and am starting another one this week.  I've read several books.  I play cards with the girls when they're home from school.  But my favorite part of the day is definitely my lunch buddy--someone has continued to organize lunch buddies for me even though I don't acutely need a lunch buddy.  That is, I can get my own lunch.  But I appreciate and love the company!  And my lunch buddy will often take me outside for a walk, which is a marvelous bonus for me!

Wednesday, September 11, 2019


Image result for air recycler button automobile
leftmost button shown is called the fart recycler
I am so grateful to tons of friends and family for looking out for me so closely.  As I recovered from eyebrow craniotomy, my mother in law arranged for daily visitors for me.  One day very near labor day, my lunch visitor (Ami, of dream-snack denier fame) arrived to find me doing poorly.  She had to call 911 on me, I don't remember the events that followed (thank goodness!), but it was concluded that I had cerebral spinal fluid built up in my brain.  I got an ambulance ride to Iowa City and had a temporary emergency brain drain installed: commercial break:  cerebrospinal fluid is a beautiful yellow color with a touch of greenish (not unlike a lemon lime pop).  A few days later, my amazing surgeon and his team of residents (I called them my flock of seagulls) installed a permanent ventricle shunt.  It drains the fluid into my peritoneal
(belly) cavity.  My kids call it my fluid recycler, kinda like the fart recycler button in your car.  It's magnet controlled. My head is half shaved and I have several sets of stitches.  They come out on the 16th.  I look like a character out of the movie Trainspotting, except with better teeth. 

After a week long stay at University of Iowa Hospitals and clinics, I was discharged to Acute Rehab in my hometown hospital.  This was a great place to recuperate.  I just got sent home today.  Things that are getting better but still have room for improvement:  my endurance, my short-term memory, my strength, my distractability.  I tell you what, brain surgery doesn't get any less exhausting the more often you do it. 

Friday, August 16, 2019

Radiation was actually lovely!

 (I actually started this post in a timely manner last week but kept getting interrupted.  So, please accept this delayed update about the mechanics of radiation rather than how I'm doing.)  Cyber Knife Radiation is done already.  Every day for 5 days(last Wed of July-the following Tuesday) and it went pretty quickly because of all of the terrific company.  Some people who care very much about me thought that it would be a lot for me to ride back and forth to Iowa City for the treatments each day, so those same people got me a really nice hotel room with two beds so that myself and a helper could stay over there.  I came home for the weekend and am deeply grateful for the nights in Iowa City.  Another thing that made the daily radiation do-able was that daily patients get free valet parking (!).  I deeply enjoyed quality time with these folks who so generously gave of their time and energy to keep me fed and take me to all of the radiation appointments.  I did something special with all of them. Martha and I tried a new lunch spot, to great success.  Uncle Rod took me up to the Coralville reservoir, where the floods of '93 and '08 had washed away the soil down to the bedrock, revealing a Devonian fossil gorge.  I couldn't navigate down into the Gorge with my walker, so I just stayed by the fountain reading the display.  It was nice to stand in the sunshine.  We also went out for Indian buffet, which was special for him because he's the only one in his family who likes it so he never gets it (I love Indian buffet).

My next comrade was dear old dad, and we had some shenanigans.  He was my buddy on the last day of radiation, and I was feeling mildly celebratory.  After a late breakfast at the Hamburg Inn #2, we stuck out on the interstate toward home.  But it was SUCH a gorgeous day!  So I suggested that we swing by the Neal Smith Wildlife Refuge and check it out.  It was only about 30 minutes out of our way.  It was a terrific choice!  All sorts of summer prairie flowers were in bloom, accompanied by hundreds of butterflies!  Also, they had an electric scooter available for patrons and a paved 1 mile hiking trail.  So I was able to enjoy a short hike, too.  Then we took the Auto tour in search of the buffalo herd.  We found them, hunkered down in a shady spot.  Didn't see the elk, though.  Then we were thirsty and hungry for a snack.  So we drove through Prairie City and got some treats at Goldies ice cream shop. I have aged out of the ability to eat dairy ice cream, so I had a big lemonade and a slice of strawberry rhubarb pie.  Sugar Rush!

Sunday, August 4, 2019

Bye Neil, and take Lloyd with you!!!

I have been a busy patient this past week! I saw Dr. Deep-Seated Tumor Neurosurgeon's residents.  I wanted someone to see my goose egg and determine if it was normal.  The resident said to keep wrapping my head in Coban until it stops popping out, and that he expects it to heal within another two weeks.  Sure enough, I seem to have made good healing progress this week and my bone hole goose egg hasn't popped out in about three days.

On that same day I saw Dr. SRS Expert to make a plan for radiation. The simple part:  Neil could be treated with a single dose of CyberKnife SRS radiation.  That was done on Wednesday.  The rather sad part:  Remember that Dr. DSTNeurosurgeon removed 95% of Lloyd?  Well, the remaining 5% is not just a tumor tidbit at the back corner.  The remaining tumor includes the tidbit as well as what looks to me like a shoreline of cancer around the blackness that is the Void left by Lloyd.  Dr. SRS Expert said that the best way to treat this shoreline would be 5 consecutive days of radiation.  I have now completed 3/5 days of this treatment, and won't know for a few months how well it worked.  Just like all of my previous radiation treatments, we'll rely on CT or MRI scans 3 months from now to see how controlled the disease is.  All I can do is remain hopeful.  This is the end of the treatment line.  Always knew there's no cure, just wanting more time.  Even if three months from now the scan shows that the tidbit or shoreline remnants of Lloyd are growing, Dr. SRS Expert said that he doesn't want to irradiate that area any further.   

Needless to say, my bone hole goose egg had popped out by the time this day of appointments was over.  Stressful! 

I've had a song stuck in my head for weeks.  The Void left by Lloyd has been filled with the beat of the Channel One Suite.