Roads Less Traveled

First point of order:  daratumumab infusion #6 is a thing of the past!  I was at the hospital at 6 AM, but somehow my name had fallen off of the schedule, so it took a little while to get me back into the system.  Favorite nurse Katie was back on board, along with Sarah, the nurse who has just moved from taking care of babies to the clinical research unit.  So I had an incredible double team–they managed to get me back on schedule, and I was out the door by 11 AM with zero reaction.  As usual, the pre-infusion Benadryl knocked me out almost immediately, and I was relatively comatose for much of the day.  But here is the really good news:  Delaney and Kendall Ozmun were my nurses for the day!  More on that fab deal below, but first, here is proof of #6:

6 down, 10 to go!!

Now on to the birthdays-can-be-great moments.  Delaney Ozmun came to Rochester on July 4th to celebrate Independence Day and her mother’s birthday!  She landed in Minneapolis in the evening, but we made it back to Rochester in time for hot dogs and fireworks over Silver Lake.  We learned that it is not acceptable to sit in the Blast Zone, especially on a fence surrounding a natural gas line–all good things to know.

We took Delaney to Downtown Rochester on July 5 so that she could experience all the offerings from the downtown Rochester restaurants–plus I needed to restock my supply of fudge for the week (for informational purposes, this week the purchase consisted of two squares of milk chocolate that had been appropriately decorated for July 4th, one square of rocky road, and one square of salty chocolate caramel).  Delaney and I then hit the pedicure place for good measure, before returning home to head over to . . . the Honkers’ baseball game!  Sadly, the Honkers continued to disappoint, although the beer and hot dogs were pretty good.

I hit the wall on Friday, July 6, and was down for a good three hour nap-athon.  When I work up, Delaney took me outside to get some fresh air, since I felt woozy.  Imagine my shock, surprise, and delight when this showed up around the corner!!!

Kendall Ozmun in Rochester–a surprise birthday present!

Kendall Ozmun was my birthday surprise!  No one even gave me a hint that she was coming; in fact, I had texted her to FaceTime that day, and the sneaky child told me that she wasn’t going to be available until the evening.  Both children with me in Rochester for my birthday–what a wonderful gift!  They enjoyed Forager, our favorite restaurant, for dinner and for beer.

Forager, at the high/low bar.  Pre-pizza.

We hit Terza for birthday dinner on the 7th–delicious Italian food, homemade pasta, yum.

So happy to have my girls in Rochester!

David headed home on July 8, and the girls and I had a fine time together.  Of course we had to take Kendall to (inflict upon Kendall) a Honkers’ game.

And I am sure the girls most enjoyed the Amish inning, sponsored by the Amish Furniture Store, in which there is no electricity used (megaphone only to announce the batters); Slider the mascot carries an Amish advertisement; and the announcer wears a fake Amish beard.  Oh, the ways of the Honkers . . .

Kendall headed back to Austin on July 9th, and I have had a lucky few more days with Delaney, who flies back to Portland and to work tomorrow morning.  So I believe I am correct–birthdays can be great, even when you are participating in a daratumumab clinical trial in Rochester, MN.  Plus I got cake.

Five down–eleven to go!

Yesterday’s Round #5 was a walk in the park.  Pretty much.  I got the concentrated version of the daratumumab (500 ml vs. 1000 ml), so the infusion process was significantly shorter.  Although check-in was still 6 AM, we didn’t get the party started until close to 7:40 AM, what with the vitals checks, the IV stick, and the prep of the daratumumab.  But once things started moving, they moved really quickly, and I walked out of the hospital at 12:15 PM.  So of course I celebrated with a large order of McDonald’s fries.  Right–who wouldn’t?

Have I mentioned that currently my only side effect is fatigue?  The pesky nausea is gone, possibly thanks to the peppermint tea from my sweet friends in Austin.  And that meant that fudge was fair game after the fries.

All that food required a (slow) stroll in the park.  Olive came, too.  Here we are–I am dutifully avoiding direct sun, which one of my meds does not enjoy.  As you can see, all’s well.

Sometimes we walk.  Sometimes we sit.

We’ve been warm for two days–in the high 90s, with high humidity.  We get a little bored on days like this.  It’s too hot to go outside–the Rochester wind makes it feel like you have stepped into the hot cycle in the dryer when you pass the front door.  That being said, the evening skies here are beautiful.

View of our apartment from the bridge by the ballpark

We keep going to the Honkers games, and the Honkers keep losing.  David, however, was the big winner last week–he won a steel travel mug based on a signature in the Honkers’ program.  He claims he never wins anything, but here is proof positive to the contrary.

Yesterday we decided to take a very early walk with Olive to try to beat the heat.  After a downtown run to Caribou Coffee, we made it all the way to Silver Lake, which is lovely.  We also found the biggest gaggle of geese, heart-shaped swan boats, and a makeshift non-blue Thomas the Tank Engine.  And then we were tired, especially Olive.  We are gearing up for infusion #5 on Monday.  All’s well.

Gaggle.  Goose convention.

See?  Sweetheart swans and odd Thomas the Tank engine

Post-walk serious nap

Infusion #4–check it off!

Checked in today at 5:50 AM with Caribou coffee in hand for daratumumab infusion 4.  Took my Benadryl, then instant nap.  Chelsea, our favorite nurse, brought a yacht-sized comfy chair for David today, so he got a nice nap as well.  Even though I got bumped back to the 1000 ml infusion bag based on a slight reaction last week, things moved along fairly quickly, and I was out the door by 2:15 PM.  The good news–no adverse reaction during the infusion, so I’m back to the 500 ml infusion next week.

We drove to Minneapolis last night to meet our friends Julie and Fram Virjee, who were in town–such a fun evening and so great to be with friends.  We stood in line at Matt’s Bar and Grill for a famous Juicy Lucy burger, which essentially consists of two burgers surrounding delicious melted lava-like cheese.  Our waiter warned us–you can’t bite into the burger immediately due to the hot cheese, hence the bar’s slogan: “Fear the Cheese.”

The Matt’s website photo looks delicious (you should go take a look)–my own photo pales in comparison, but the burger was divine.  And check out the fries.

When the sun comes out in Rochester, the festivals begin–hence our adventure to Rochesterfest.

Not making it up.

27 food vendors, including corn on a stick, gyros, curly fries, a milkshake, and a Minneapple pie (that one was all me).  Hot air balloons!  Music!  Not a bad way to spend an evening.

Then it was off to explore small towns along the Mississippi River–Wabasha and Red Wing–recommended for their antique stores.  Lessons learned along the way:

• Olive does not enjoy antique stores
• Antique stores do not enjoy Olive

Given our canine passenger, we also had to take a pass on the Red Wing shoe store.  But the drive itself was beautiful–the Mississippi River was its compelling, rushing self, and the weather was glorious.  Also I found a chocolate shop, so the day was complete.

Mississippi River

Daratumumab Infusion 3, a thing of the past

Daratumumab infusion #3 was yesterday–nailed it.  Kind of.  This time the medicine was much more concentrated, in a 500 ml bag, not a 1000 ml bag, but same amount of Daratumumab.  I had a slight reaction (and I mean really slight–lips got just a little tingly), so they had to slow down the infusion.  Which means we got there at 6 AM, got started at 7:30 AM (the fastest they can get everything rolling), and finished at 12:40 PM.  Unfortunately, that tiny little reaction means we go back to the 1000 ml bag next Monday.  This slows the infusion back down and is really a cramp in my style.

Rochester has had Texas-like heat for the past three days, but this morning we had tons of rain and a drop in the temperature to 65 degrees.  Lovely.  David and I hit the public library book sale and scored many books for a total of $18.  So we are set for reading materials for the foreseeable future.

Did I mention that Olive went into heat the very day we arrived in Rochester?  That has been no.fun.at.all.  She is an insane dog in heat, and we will remedy that little problem as soon as we are back in Austin.  Let’s just say that she is not discriminating in her choice of boy dogs, and we are watching her like a hawk.  As a result, the high point in her day is watching for the mailman, see below.

Pathetic, isn’t it?

Daratumumab Infusion 2 over and done!  We were there at 6 AM, and we were out the door by 2 PM.  Because of my reaction on Day 1, Dr. Zand treated today as a bit of a do-over, and the daratumumab rolled out in a 1000 ml bag.  Since it was a reaction-free day, the daratumumab for Round 3 will come in a 500 ml bag–same amount of the drug, only a little more concentrated.  Katie, today’s nurse, predicts that next week I will be out the door no later than noon.  This sounds like an excellent plan.  Apparently Benadryl renders me lights-out, because I slept through most of the today’s event.

Warm socks, happy feet!

I’m not feeling bad today at all.  We’ve already had Olive out on two post-infusion walks, and I predict a possibly restless night’s sleep tonight, given the steroids of the day.  Maybe a few more Olive walks will do the trick.

I pack up in the morning to fly to LA on business.  I’ll head back to Rochester on Wednesday night on the red-eye.

Two down, fourteen to go:

Infusion 2 complete

Today is Saturday, and my first infusion was five days ago.  The side effects have been tolerable–mostly low-grade nausea and fatigue that is extreme at times.  We will pack up and head back to the hospital on Monday morning, with a generous extra allowance of 15 minutes to arrive at 6 AM for Infusion #2.  I’ll be ready to go with warm socks from Kendall and with Delaney’s heart cards.

Warm feet in cold hospital room!

During our down time, we’ve spent some time exploring Rochester.  David does indeed now have his bike from Walmart, which he is putting together as I type.  We have made it to the Farmers’ Market and to a few parks along the way.  Olive is a huge fan favorite in Rochester.

Seen and drooled over at the Farmers’ Market

Hard to get through the Farmers’ Market without gaining some pounds.

We have also discovered the Rochester Honkers baseball team!  The stadium is maybe 200 yards from our apartment.  Unfortunately, we missed Roto Rooters’ Seat Cushion night, but we have high hopes for Mason Jar night next week.

Nothing says baseball like hot dogs.  With onions.

More to come next week after Round 2.

We made it to the Domitilla Building at the Mayo St. Mary’s Campus by 5:45 AM yesterday for the first daratumumab treatment.  The receptionist told us we were “early,” a sentiment with which David and I completely agreed.  Chelsea, my nurse, took me back to my hospital room at 6 AM and outfitted me with a lovely IV to wear for the rest of the day.  Pre-infusion meds were methylprednisone, Tylenol, and Benadryl.  Not too exciting.  Chelsea started the infusion very slowly and gradually increased it over the course of the day.  When she first increased the meds, I had a bit of an allergic reaction–like the immediate onset of a very bad cold, complete with lots of coughing, sneezing, stuffy nose, itchy mouth.  Chelsea gave me another Benadryl, I had a nice long snooze, and all was well when I finally woke up.  We loved Chelsea and will see her two more times on our early mornings, at least for the next six weeks or so.

David hung out with me at the hospital for a while, then tended to Olive, who was not pleased about being in her crate.  He brought me a hamburger for lunch, then I fell asleep again.

Shift change at 2:30 PM brought me a new nurse–Mel–also delightful.  We finished off the infusion at 5 PM, David picked me up, we hit the 24/7 Mayo pharmacy for meds, then headed back to Apartment 205 after a long D-Day.

Today I am feeling fine, just very sleepy, which suits Olive fine, since she is always up for a napping buddy.  I’m taking an antibiotic, which I’ll take throughout all the infusions, plus a dose of steroids for two days after each infusion.

Weather’s nice, baby ducks and baby geese are being hatched and raised in the park next door, Olive has many areas to sniff and walk, David is getting a bike on Thursday.  All’s well.

When I first set up this blog site, I had the very best of intentions to document the many places I planned to travel.  With the exception of my incredible 2013 trip to Cambodia and Laos with Delaney and Kendall, the site has been an epic fail.  I have taken several wonderful trips that now exist in photos and in my memory, but appear nowhere in blog form (where they would exist in a more accurate and complete manner than in my failing memory).  That being said, I have never closed the account, and maybe there was a reason for that.

I am approaching an untraveled road.  In 2006, I learned that I have a rare disease called dense deposit disease.  This disease is an autoimmune disease that attacks the kidneys.  I have monitored the disease now for 12 years, but recently it took a decidedly nasty turn.  The fine nephrologists at the Mayo Clinic have recommended a trial study for me to see if the monoclonal protein that I also have may be the cause of the dense deposit disease.

I have decided to move forward with the trial.  It involves six months of infusions–one a week for eight weeks, then one every other week for four months.  All infusions must be done in Rochester, MN, at the Mayo Clinic.  The entire trial lasts for 12 months.  So David and I have moved to Rochester for the next six weeks or so to see how I react to the infusions.  If all goes well, I will fly in and out for the remaining infusions.  We have brought Olive, my mini aussie, with us to Rochester.  She is a trooper.

Olive in her car seat on the very long drive from Austin to Rochester