(23) Happy Anniversary To Me

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Yes, it has been a year since the big operation.  To celebrate, Eileen, Henry the dog, and I went to Iowa for a check up.  This time it was with Dr. O’Donnell since Dr. Gupta has moved to Los Angeles to take care of celebrity bladders. After a review of the CT scan, I was classified NED (no evidence of disease) – yeah! – and instead of going back every 3 months, I’m now on a 6-month schedule. The doctor did confirm that the chemo knocked out enough bone marrow to make me anemic.  Seems like a small problem.

THE PHOTO: On Saturday evening, October 3rd, two days after my operation, Eileen and Tom Zimmerman kidnapped me, got me into a wheelchair, and traveled around the hospital until they found a piano they had seen earlier in the day. Tom was about to be in a piano competition, so he had his repertoire memorized. I was still in that drugged fuzzy state of mind with tubes coming into me and going out. It seemed like a grand adventure.  After an up and down elevator ride and exploring some hallways, they found the piano. Tom got right to playing.  Eileen took the video and as she scanned the room, she was surprised to see the small stained glass of a cardinal, very reminiscent of Roland’s work.  It was without a doubt the most beautiful concert I ever attended. (Click on the photo – it’s linked to a short video.)

(22) No Reason To Hurry

12065683-silver-android-robot-with-thumb-up-smiling-3d-illustration-on-whiteDoctor Gupta had said it would take about an hour on Monday to move things around and reconnect.  But knowing that my insides are extremely fascinating, it’s not surprising that it took a little over four hours to compete the operation. I, of course, was in Looking Glass land and sleeping peacefully.

I do find it very comforting to know that Dr. Gupta, along with the resident assisting him on the robot, took their time to look around and tighten things up.  Kind of like spring cleaning.  The operation was a success, I’m feeling great, and I only spent Monday night in the hospital.

Eileen is now part of my surgical team.  I have a couple of stitches that need to stay in place for a few days, and it wasn’t practical to drive to Iowa for a 2 minute procedure. So Eileen volunteered. No, that’s not true.  She was like a little kid, “Let me do it! Let me do it!” I don’t know if I’ve ever seen her happier as she consulted with Dr. Gupta about the process. (I think most of you know that Eileen has already been granted access to “off limits” areas so that she could watch as things were “moved” inside me.) Doctor Eileen has me on her schedule for later this afternoon.  I’ve been told I won’t feel any pain.

I hope everyone has a happy Memorial Day.

 

(21) Time For A Tune Up

tuneup-We went to Iowa on Wednesday for a nuclear flow test… for this test they inject me with radioactive fluid, then track it as it makes its way through my body.  This test is intended to serve as a benchmark so that if I have problems in the future, they have something to compare to.

Two things they found.  One is that I have one over-achieving kidney (left does 70% of the work) and one slacker (right does 30%). 50-50 is best, but as long as my under-achiever doesn’t fall asleep on the job, things will be OK.

The test also indicated that I might have a “pinch” near the point where the “tube” from my last surgery connects to my underachieving kidney.  This could be a cause of the sluggishness, or it might not (no way to tell).  It is definitely something that, over time, would have a negative impact. So….

Dr. said he’d like to go in (robotically), and basically replace about an inch of the connection.  He said it would take an hour or so.  We asked about options and after discussing it, I agreed to the surgery.  THEN came the surprise.  He looked at his schedule.  “We’ll plan on Monday the 23rd.”

That’s fast! Eileen and I are going to Iowa tomorrow (Sunday) night in order to be at the hospital at 6 am on Monday.  Surgery is at 8:15 am. The Dr. is reasonably confident that I’ll be able to go home on Tuesday.  I’m hoping he’s right. Everyone at work quickly stepped up to cover my absence.

I’m not looking forward to life on opioids again, but it may not be as bad since I’m well past the effects of chemo.  My goal is to be back at work by the end of next week.

Let Eileen know you’re thinking about her because I know this stuff takes a toll.  (My friends at the office gave me at least 50 DVDs to help get me through, so I’ll be fine.)

(20) An update to begin 2016

IMG_7235Eileen, Josie, and I drove out to Iowa City on Wednesday the 13th for my first post-op CT scan.  If you’re unfamiliar with cancer lingo, doctors don’t say a patient is cancer-free.  They look at all of the available data and if cancer is not present, the official diagnoses is No Evidence of Disease. Based on my scans, I am classified NED. Yes! My next CT scan is scheduled for April 13th.

While in Iowa Dr. Gupta took photos of my stomach to show other patients what they might look like after the surgery.   I’m assuming he only wants to show others the best case scenario. So when it comes to stomach scars, mine are fairly bland, small, and I’m going to say attractive.

My hair has fully returned, though not darker as the unofficial “possible” side effects of chemo listed.  One side effect that did happen is the loss of hair in my inner ear. That hair never grows back, but I only notice the loss in very noisy environments.

Coffee began tasting good again towards the beginning of December.  And by Christmas, my tastes were 100% back to normal (good timing!). For some unknown reason, alcohol tastes better than it did pre-chemo.  Rather than question this, I am accepting it as a sign and drinking more.

So you know, our traveling companion Josie, pictured, is the second puppy that Eileen is training working with Canine Peace of Mind (web site). The first puppy she trained for them, Arthur, is now living in New York City.  Eileen trains the puppy until they are about 9 months old and they are then sold as a ready-to-go-package.   If you watch the video on the web site link, you’ll see that a lot of the footage was shot around our house (some with a drone).

Thank you all for keeping me in your thoughts.

(19) First full day back at work

IMG_6533Eileen and I went to Iowa last Wednesday (14th) for a check up and update.  Doctor said that pathology showed no evidence of disease.  That’s great news!  My next doctor’s visit/CT Scan is scheduled for mid January. I’ll be on an every-three-month check up schedule for at least a year.

Prior to today (21st) I went to work twice to see how I’d feel… I guess I work hard because I only lasted about three hours each time.  (Plus both days I took pain pills which tend to make me sluggish.) Today is minimum pill day and my first full day back.  Eileen drove me, so there’s no leaving early.  Only a couple hours to go.  WooHoo!

(18) There’s No Place Like Home…

IMG_6275Especially if you have someone like Eileen.  Since arriving home Sunday night, we’ve been taking walks through the pines every morning.  A tad chilly this morning, but the weather has been perfect.

I was told to judge my progress week to week, and not day to day.  Good advice! I haven’t had much pain. And looking back at how I felt last Friday, I’m doing great. Everything is healing, everything works as it should, and I’m certain Eileen will be hanging a framed photo of Dr. Gupta on our front door. Such a nice man. I find it amazing that he could keep interested in my “insides” for 10 hours. It is because he was able to keep me on the “robot” the entire time that the surgery went so well and that I am healing so quickly.

We are going to Iowa City on Wednesday the 14th to remove a few “things” that they needed to leave in for a bit.  More then.

(16) Thank you!

IMG_6191We had perfect weather for our bike ride!  We each did 33 miles.  Eileen had it a bit harder than I did because we brought Paddy, and Eileen pulled the cart (Paddy weighs in at a chunky 16 lbs.)

I appreciate all of the kind and positive thoughts you continue to send my way. They’re coming along with me to Iowa and I will keep them all very close. If I’m not too groggy, I’ll send an update Thursday evening.  Friday morning for sure.

(15) Good to go!

imgresEileen and I spent yesterday in Iowa City talking with the team that will perform and oversee my bladder removal surgery next Thursday. It was a non-stop stream of people, including the surgeon, his assistant, his nurse, the dietitian, a frailty assessor (I’m not), and even a research scientist…  Yes, I am donating my bladder and other assorted removed body parts to science.  They will be frozen for future generations of scientists to study.  As part of the agreement, I will also give them a couple vials of blood every time I go to Iowa for a follow up, and fill out a questionnaire,  for the rest of my life.

On October 1, I’ll check into surgery at 7:30 am, and they’re thinking I’ll be out at soon as 3 pm or as late as 6 pm. This is for the ileal conduit (the tapper). I decided against the neo bladder after a long discussion with my surgeon. Not only would the neo surgery be several hours longer, but I had to assess my desire/willingness to deal with a year or two of training, along with the almost certainty of complications and emergency room visits. I chose the tried and true.  Eileen and I then met with the “stoma” nurse.  I now have a purple bulls-eye on my stomach.

Even if I don’t get out of surgery until 6 pm, they say they’ll have me out of bed and walking the same day. If all goes well, I could be in the hospital 4 days. Eileen will be staying in a nearby motel.

I did get a high contrast CT scan yesterday and it showed that there is nothing outside the bladder. This means removing the bladder should remove all the cancer.

The surgeon says I’ll be restricted to lifting no more than 10 pounds for several months, but after that I can slowly increase the amount.  It does appear that my snow shoveling will be off limits this winter, but moving bales of hay and pulling weeds can be part of next summer.

Since they get me out of bed so soon, I’ll use that time to update everyone on how the surgery went and how I feel.  Thank you again for all of your kind thoughts, prayers, and good wishes.

(PS – Tomorrow we’re heading to Minnesota to our favorite bike path near Lanesboro.  We’re meeting 6 of our friend there and we’ll be camping out near the river.  Weather looks like it’ll be great!)

 

(14) Did it!

FullSizeRenderAll my blood work checked out OK so I was able to take the fourth (and final) round of the dd-MVAC yesterday (08/26).  Phew!  I would have hated to have it postponed.  Now I will have a routine blood test in three weeks, a consultation and CT Scan in Iowa City in four weeks, and Bladder removal October 1st.

The staff at the Oncology lab had an impromptu celebration for me as I finished my fourth cycle.They played music, gave me hugs,a certificate, and bottle of bubbly.  Thank you Krista, Cindy, Val, Cheryl, and Brittany.  I left feeling always welcome there, always comforted by you, and that you always cared about me.  Thank you. (We are wearing the buttons that you gave to us – they started several conversations when we went shopping afterwards… so what did you two just do?)

I have to admit I am not  a “complete” Superman.  All last week, my nausea had been dramatically flaring up whenever I though of going back for the fourth round.  Aware guy that I am, I knew it was all psychological, yet no amount of spiritual, cosmic, musical, universal, or wood chopping thoughts could snap me out of it. I told Dr. Shipp, and low and behold, there’s a drug for that.  And within two hours my stomach calmed, my mind became mental mush, and I’ll have to ask Eileen to write down all of the things we (I) agreed to do.