A Pleasant lunch instead of Chemo

Early yesterday morning we drove to the Providence Hospital for a consult with our oncologist prior to the scheduled chemo. While the oncologist was totally impressed with the rapid recovery after the radiation and the surgery on my hip and leg, she was not totally convinced that I was free of any infection, and wanted to wait a week before the next load of chemo. So chemo was rescheduled but that fortunately still gives a week for recovery before the first of the summer guests will arrive: my brother Hendrik Jan will fly in on June 10th on the direct flight from Amsterdam. After some more chest x rays (by now I glow in the dark), we had time for a lovely lunch with Bonnie and Sara in downtown Portland.

Lovely lunch companions downtown Portland

After lunch we went to surgeon's office to have the staples removed (it is no longer needle and threat but ordinary staples just like in the office). The surgeon was equally impressed with the rapid recovery and told us to skip the next appointment which would normally take place after a month. So far so good!

Our New Normal

As Sara posted yesterday, we reached a milestone yesterday completing radiation therapy.  Today was our first day without medical appointments or related activities.  We started on daily living taking into consideration our limitations on mobility and energy.  First on the agenda was a haircut

From there we made our way to the bank, 250 yards (meters), loading the walker and ourselves into the car to get there.  We needed our proof of life certificate notarized so we can collect pension money from Europe.

The notary was glad to see us and duly noted that we were alive so we motored on to the store for some shopping (nearly retracing the former 250 yards in the car).  Hot Rod tested the garden furniture while I picked up a few supplies.

Lunch followed at our local Italian restaurant and then a stop at Home Depot to buy a new washer and dryer.  We felt it was a very entertaining and rewarding day so contented naps were taken.

We are counting our blessings as we begin to see some good days in all of this.

Woot! Woot! We hit a milestone

Today was the last day of radiation!  This came with a certificate and as H Rod says 'hugs from all the cute attendants'.  Keep in mind when you're chronologically enhanced like H Rod those cute attendants might be well into their 50's.  Either way, hugs were given and the milestone is complete. 

Guys Day Out

Even on the best of teams the members occasionally need to take time off from each other and  have some fun with other people.

Thanks to our wonderful neighbor Tom, Barend had a fun day away from me, The Spice.  Tom had committed to get Barend to his radiation appointment today because I had a dentist appointment, which sometimes runs longer than expected and creates residual discomfort.  This favor turned in to lunch, some cheerful conversation and laughs, then returning a chipper Hot Rod to his couch for a late afternoon nap.

Even though I kind of missed being at the center of the action, I enjoyed the leisurely schedule and managed a few extra things I really wanted to do which included a late afternoon nap after H Rod had settled on the couch.

Thank goodness we have such great friends and family.

Keep the fan mail coming!

A Parade of Doctors Appointments

Barend is continuing his stint in radiation this week after a weekend off.  Over the weekend there was a mild fever and Barend's cough came back some, so after radiation they went back to the oncologist office for stronger antibiotics and an x-ray. 

Lately it has felt like the never-ending parade of doctors appointments and we're all hoping that we get over the hump soon and get to start enjoying life a little more.  The good news is that Barend is walking much better now that the rod is installed and once he gets his strength back in that hip he should be moving better.  Obviously the goal is not to have a walker, if for no other reason than getting his daughter's comments to stop. 

After Wednesday we should have a break from radiation too and hopefully some time to rest, catch up and get back into the swing of things.  After the 5 days of radiation there should be a long break from that and then it just becomes the regular three-week chemo appointment.  I think I see the top of the hump!

There's a new kabouter in town

A reminder for those of you needing an incentive to travel this summer!

This weekend three of the grandkids went to visit Opa and Oma.  To their delight a new gnome was visiting with Mr Bubbles.  He's from The Netherlands and shines a light, or as Emmett tells me, he's fixing the light. 

One of the weekend projects was checking all the sprinklers to make sure they were operational after the winter.  We lucked out that only one needed major repair and the kids had a blast enjoying the sprinklers even though the sun didn't come out until later. 

This kid will find kitchen tools anywhere...

Radiation

Radiation started on Thursday May 16, just 48 hours after the Titanium Hot Rod was installed in my leg.  You can hardly ask for faster service. I will get 5 treatments and they will blast high doses of rays through the lungs, spine and the thigh bone (the Femur for "words with Friends" friends).  The technicians constructed a cast of my body, this is mounted on a small platform and the magic begins. I was whizzed up to the ceiling with big globes buzzing underneath, then lowerd and globes buzz from above, turned around and more buzzing from just about everywhere.  You don't notice much happening but when I get home I can barely make it to the couch for a very long afternoon nap. The Friday radition has taken place and there will be three more next week.

Home again

Barend was returned to the family today in the early afternoon.  He was subjected to walker training at the hospital with Sara as witness, and she has an iPhone picture to badger her father should he get out of control.  We traded in the crutches for a walker on the way home and he has managed to chase me around the kitchen counter with it already.  Should issue his driving license tomorrow along with his "dirty old man" certificate since he flashed me as well.
We had a fantastic time opening the fun gift packet from Pieter and Agnes.  Lots of fun stuff including gummi pigs and cryptic puzzles.
Tomorrow we start radiation so we are hoping more pain relief is on the way, though the drugs do the trick and create some amusing conversations.

The Bionic Man

Barend made it through hip surgery today successfully! With the tumor there the hip bone was becoming more fragile so stabilizing that was the number one priority.  Barend now has a titanium rod in his hip so that should make it very stable.  After a night or two in the hospital he'll be back home and getting ready for the next phase, radiation. 

After work I headed to the hospital and got there just in time as the surgery was completed.  Of course a great daughter probably would have entertained my mom for the four hours she waited!

After talking to the doctor we realized we had to wait another hour or two for Barend to get out of recovery so to make up for not entertaining my mom, I took her to dinner and made sure we had some drinks.  After leaving the restaurant we got a voicemail from Barend that he was in the room so we headed back and upon entering the hospital we were getting paged.  Poor Barend was worried we had lost him and were aimlessly walking around the hospital.  He was proud when he found out we were actually just out having drinks. 

Barend was in a great mood when we got there.  Since coming home I got a text that I can now call him Hot Rod Barend.  From now on I'll call him H-Rod for short. 

Date Night

Some months ago we had bought tickets for the theater. It was a one-man show with Bill Cosby and  we were both looking forward to the show because this guy is totally hilarious. Life should be a party so we decided to go anyway.
We booked a hotel room a couple blocks from the theater on Hilton hotel reward points (Thank you SCA for sponsoring), had a delicious dinner in the hotel and went to see the show, armed with pills and a bottle of ant-acids so as not to disturb the people around us with unexpected hick-ups, an apparent side effect of the chemo.

We are hooked up...

We have a few updates from the last two days.  First of all the MRI and bone scan are complete and this morning Barend had another doctor appointment.  At this point I think we have just about all of the news, although not all of it is great news.  On the upside though, at least now we know what we're dealing with and the treatment plan is becoming more finalized. 

A tumor was found in the hip and right now that is going to be the highest priority issue to tackle as the tumor is decreasing the bone strenght.  Broken hips aren't welcome right now so pending final consultation with the orthopedic surgeon, surgery will be scheduled to insert a pin and stabilize the hip.  Additionally radiation will start to target the tumor on the hip.  Besides the hip pain, which will now be managed better, Barend is feeling pretty good. 

Right now Barend is hooked up to chemo for his first treatment.  Tomorrow should be the first radiation appointment so we're aggressively starting this process.  The mood in the chemo unit is good and Barend is in good company (that's a compliment to myself as I'm sitting next to him) and as I write this he's checking his stocks and things look good onthat front. 

Beautiful Lake Days

The weather here in Portland has been simply amazing over the last few days.  With temperatures in the eighties I can't think of a better place to be than my parents lake house.  We headed out there with the kids on Saturday and thoroughly enjoyed ourselves. 
For those of you who haven't seen 'Camp Gnome' imagine huge yards (front and back) a tree house hidden behind the trees, the lake behind the house of course, and a gnome that hides chocolate coins every time we come to visit.  The fun just doesn't end.  The kids went up and down the slide from the treehouse about 35 times each time yelling 'Ready' and waiting for Opa to say 'Go' so he would catch them at the bottom.  There was a lot of wind so we skipped the canoe trip but if this weather holds out I'm sure the canoe will be pulled out and prepped for summer soon. 

Kellan exploring the Hippie Gnome

I think some people worry that we might be in a bad mental state with the recent cancer diagnosis but that's not true at all.  I'm sure we are going to have our ups and downs but right now we are all continuing to enjoy each day as it comes.  If you're concerned about picking up the phone or sending a note because you don't know what to say, please don't let that stop you.  Right now we're all pretty happy and would love to hear from friends and family. 

United Healthcare Bureaucracy

The MRI and PET scan were supposed take place today, but there was no clearance from the the insurance company: United Healthcare. I spent a long time on the phone with the company and found out that they blamed the Oncologist who ordered the test. Since it was not ordered as an urgent test, according to the company rules, United Healthcare has 10 days to respond. 10 DAYS!! They added that if the oncologist were to reorder the test as urgent, it would take longer. My pants fell down from pure amazement. Good thing I was home.

Proud Grandparents

Definitely proud but still wondering how to line up 3 grandkids for a picture.

Barend with 3 gorgeous girls - what a life!

MRI and PET Scan Delays

Apparently the MRI and PET scan requests were held up in the red tape of insurance so today's appointment was cancelled.  After calling the team* assigned to Barend's case and insurance we're now waiting for the request to go through the process so we can get the appointment back. 

When I first heard what happened I immediately thought of a scene in the movie "As Good as it Gets" where the mom, Carol, goes off about HMO's:

Carol Connelly: Fucking H.M.O. bastard pieces of shit!
Beverly Connelly: Carol!
Carol Connelly: Sorry.
Dr. Martin Bettes: It's okay. Actually, I think that's their technical name.

One of the key lessons in life I feel my dad taught me is that there are things you can do something about and some things you can't.  When there isn't anything left to do, there's no point in getting all riled up.  That just ruins the day.  He has the same attitude here and after every possible call was made it was time to move on with the day.   Tomorrow we'll try again.

* As part of the treatment the family is assigned a Pallative Care team which includes the oncologist, a nurse, the scheduling team and then also a social worker and an RN.  The RN is focused not on the medical checks but more on monitoring and seeing the pain impact.  The social worker and RN are definitely family focused and not just on Barend.
They also mentioned there was free acupuncture and massage therapy available in the building for patients and family.  Oma and I are working on reserving our spots!