Weekend in review and week ahead

This past Wednesday, we went to our first Whacky Wednesday at the Back Porch.  Connie didn't last too long in the heat, but she hung in there. 

We went to a new bar Thursday night (Lelo's, the former Wild Horse Saloon and Grill) for the Parrotheads of Port Aransas Fourth Thursday Happy Hour and Connie was a trooper.  Liked Lelo's.  The burgers/buns were fantastic.  It was a huge turnout.

Friday was a big test for us.  I went to play golf while Connie stayed home with the girls.  She got along famously.  First time I've done that since June 4th.  Always worried in Amherst since there were so few people there during the week.  That night, I had committed to work on the food committee for the Wings Party of the PHC and I helped at the beach party, while Connie stayed back.






Saturday night, I helped on the food committee at the Gala while keeping tabs on Connie at home.  Again, she did great -- there was even a beer or two missing when I got back.

This week is going to suck for her.  Last treatment, her port couldn't be accessed (as was the case towards the end at the Cleveland Clinic), and she had to go through her arm.  Made the decision to get her port replaced.  This week she's got a treatment on Monday (through her arm again), pre-op appointment at Shoreline Hospital Tuesday, the actual procedure on Wednesday, then a brain CT for the neurosurgeon in Cleveland gets done on Thursday.

Blowing this popsicle stand

Another Connie update

Got to see Connie’s regular neurologist (hate even having to write that). She had some kind of shocking news that all the tests compared back to last year shows she didn’t have a seizure Friday. Best guess is that the high fever overheated the brain and shut things down. Big question is why the high fever normally associated with infection, but can’t locate an infection? I’m back to assumption of new chemo, but I’m not a Doctor. Going to talk it over with Oncologist’s nurse when she gets back to me.

She’s again very alert, doing the physical things about back to where she was Thursday. Mental things not so much. Real trouble there, along with peripheral vision issues with right eye still present.
Occupational therapist worked with her for about an hour and didn’t stress her too much which is great.

Right now, I think, plan is going to be for dismissal tomorrow with either home therapy care or assisted nursing rehab at a location near Beffy in FaIrview Park.

Connie update

Her heart rate is still high, her blood pressure is still low.

Just met with Dr. She could do the physical questions, none of the mental ones. Watching her eat she’s still having hand eye coordination problems. Some small trembling also. Nurse just asked what she ate for breakfast, she couldn’t say the word “bacon” without lots of clues.

Going to observe one more day then probably dismiss on Monday. Thought that was shocking since she hasn’t been out of bed. PT will be in tomorrow, so that will be a challenge.

Think it’s more the “history” of seizures she has now because of the brain lesions which he said are the root of this issue. Unfortunately, we might have to get used to this awful pattern.

Connie gets admitted to the hospital

Been a tough day. Connie had port issues again, and I was ready to post for my ex-students who were nurses, if you had any friends who were nurses at the CCF's Moll Pavilion in Fairview Park, to warn them about me coming over for an ass ripping. Thankfully (for all involved), after a 2 hour trial and error, her port started working.

Day just got worse. Connie laid down to take a nap which isn’t unusual. Little longer than normal, then I started noticing “uh oh” problems. Called the squad, currently in the ER waiting to get her stabilized for a run downtown to the Clinic. Might be reaction to chemo, but my money is on a brain seizure.


Got to the Clinic downtown in the Neuro Clinic wing (H60B) in the night. Temperature has steadily come down, heart rate back to normal. Met with the Dr this morning, got 70-75% of the questions right. Past 12 hours (which she doesn’t remember at all) has gone from barely answering yes no questions to knowing where she is, day of the week, etc.

This is a minor mirror of last year. Where she is now in 12 hours took her 3 days last time. Drill will be the same. Tests, hook her head up to wires, watch the squiggly lines on the monitor (Bethany’s favorite) and hopefully get released with improvement mid week.

Neutropenic Fever Strikes

About 6:15a, Connie asked me to get her an extra blanket and turn the AC up higher.  About 7:30a, she asked if I would take her temperature.  It was 101.6.

I always kid her that since she's been doing chemo treatments, she's always 97.x degrees.  That's why its 85 in the rig and she's "comfortable", or she's putting on sweatshirts when its in the 70's.

So for her to be 101.6 was incredibly disturbing.  We got a magnetic reminder for our fridge (which isn't metal) that if she should have a temperature of 100.4 or higher to call in and be prepared to go to the ER.  She had Neutropenic Fever which you can read about here.

Got to the Cleveland Clinic ER in Avon (about 20 minutes away) and they actually have a Neutropenic room (who knew?).  Germ free and heat free.  Not sure what it was, but it was damn cold in there.  Did blood work, did IV, did antibiotics and came to the conclusion that we're not sure what it is, so we need to admit her to figure out what is causing the fever.

They transported her to Fairview (about two miles from our daughter AND where she's scheduled to go for her baby delivery) and are monitoring her plus putting in more antibiotics.  Still hadn't gotten the fever below 99.7 by 3p ET Sunday afternoon.

That's our update for now.

It was either the tests or laughing too hard....

Just had a memorable weekend.

On Thursday, Connie got X-rays on the hole in her lung (pneumo thorax) then Friday met with the Pulmonary Doctor.  We both thought it was odd that she did a breathing test, where you exhale as hard as you can, inhale large, then exhale hard again.  She probably did that 5-6 repetitions.

Doctor said she still had a small hole, but we wouldn't need to see him for a month unless she started having pains at which point we were to call 9-1-1 immediately.  Disappointed that the lung wasn't fully healed, but with him saying see you in a month, we could tell his lack of concern.

We went over to our friends Don and April in Russell Township (Geauga Co.) for dinner and a sleepover before going to head to Bethany and James' house for her birthday celebration on Saturday.  We've known the Green's for 30 years, Don was the head football coach where I got my first Band Director job in Jamestown, Ohio.  Been friends ever since.

After a few beverages, we started going over stories, remembering this, remembering that, correcting each other on what we all thought were the facts.  We did a lot of laughing.

About 4a the next morning, Connie sat up and said she was having some pains, but she was going to try and sleep a different way.  About 6:30a, the pain was still there and off we headed for Hillcrest hospital.  Did all the tests, X-Rays, Cat Scans, etc. and, though the hole was still there, it wasn't any different from the scans on Thursday.  After ruling everything out, and the pain subsiding, they released her from the E.R.  She was allowed to go to Bethany's as long as she didn't do anything.

We went back to Don and April's (who were watching the girls along with their 3 cockers), gathered up everything, and headed to Fairview Park (OH) where Bethany and James live.  Had another great time there, Connie's Dad and his friend surprised Bethany by driving up from Wilmington (OH).

We met lots of Bethany and James' friends and co-workers, even reconnected with one of Bethany's childhood friends from Ashtabula.  Carmen and Sloopy even met some new friends.  The morning took its toll and we retired earlier than others.

Sunday (Father's Day), Bethany and James took his Dad and I to Springvale Golf Course for 18 holes of fun and laughter while Connie and James' Mom stayed back at their house.  Perfect weather, great fun, and a nice course.  I really enjoyed it.

After another terrific dinner, we gathered up our stuff and the girls and headed back home to Ashtabula.  A memorable weekend in our rear view mirror.

And the blog turns back to medical updates

Been a while since we posted.  Really hasn't been much to update.  Until today.

At about 1:15p today (Monday, June the 2nd) Connie started having pretty severe pain around her left shoulder and difficulty breathing.  Brought her to the ER here in Ashtabula.

She had blood work taken and the ER doctor ordered a chest X-ray (which was done in the room) and she got a CT scan of her chest.

Her breathing improved with oxygen, but pain is still an issue.

After a couple of hours we got doctor talk.  Cancer has created small hole in left lung and it basically was leaking.  Going to keep her overnight (at least) for observation to see if it heals.  Normal healthy lungs would heal itself as the hole is small.  Because that's not the case is the reason for being vigilant.

Will use the blog to keep everyone updated.  Thanks for your prayers.

What a week....

Sitting in some church's parking lot two blocks from the Cleveland Clinic with the rig and the girls.  Thought I would reflect on the week passed.
We had nothing but rain and miserable weather the first part of the week.  Awful.  Zero good.  Don't think it ever broke 60.
On Tuesday, there was a little bit of a break, so I thought I would dump the water out of the raft and maybe take a little test.  Got just far enough away from the dock and the engine died.  Rowed myself back to the dock (which was a great cardio workout, by the way) and took a look at the engine, the line, the tank.  I couldn't figure out anything simple, which would have been all I could have dealt with.
Tuesday, I got up early and headed to the south of Ashtabula County (actually, into PA) and had a Nissan outboard guy take a look at it.  Turns out, our tank lid has a leak and there was tons of water in the tank.  He went in, cleaned some things up, and within an hour, I was back on my way.
I took Connie to Ashtabula Medical Center at noon, as she was scheduled to do some CT scans and MRI's.  After she was done at 4:30p, we headed off to our daughter's place to celebrate her 27th birthday.  Hardly seems possible.
My good friend Rich was in town at the airport for some business, and we were fortunate that he could join the four of us at a restaurant in Rocky River for dinner.  Great times as always.
While we were gone, the girls and Tucker kept themselves amused at Bethany's house and continued on after we got home.  Damn, that dog can play hard.
Wednesday, we headed back to Ashtabula and stopped at the Cleveland Clinic in Willoughby Hills for my blood work as I had an appointment on Thursday as part of my annual check up where they tell me I'm fat and need to change my diet.
Rained again on Thursday, so no packing.  We did however feel safe since we hadn't heard from any doctors saying to get Connie to the hospital making our reservation for the National Heartland RV Rally in Goshen, Indiana put on by the Heartland Owners Club.  A solid week of networking, meeting old friends, making new friends, hearing seminars from suppliers and what not.  We'd been holding off until what we thought was the last minute.

First trip for the bike!

Friday morning it let up and we could get the rig packed and head to the Ohio Heartland RV Rally at Scenic Hills RV in Berlin, OH (Amish country, Little Switzerland, etc.).  Sugarcreek, OH that we got the call we didn't want to get.  Our oncologist was setting up appointments for Connie at the Cleveland Clinic on Monday to see their radiation oncologist and gamma knife specialist.  Results from the CT scan weren't good.
It was as we were passing through
Nothing that was going to make us turn around that moment, but it was going to make us change our plans.  (more on that in a moment).

There were 8 couples at the Scenic Hills RV Park, all Heartland owners and 3 couples from Xenia -- about 17 miles north of where we both grew up (Wilmington) and 8 miles west of where I taught for my first four years (Jamestown).  Was a fantastic time, with eating and a campfire being the main attractions.
Our first meal on Friday night was at Mrs. Yoder's kitchen, a great buffet that was packed on a Friday night with both tourists and locals.  (The parking lot was the giveaway).

Saturday afternoon we took a drive into Sugarcreek (the park gave us a couple for a 1/3 lb. of free cheese at the Swiss Village Bulk Foods -- can't pass that up!).  They had samples of Homemade Chocolate Chip Cheeseball with graham cracker prezels that was awesome!
On the way back started looking for a furniture piece Connie had seen at the RV office which would be the answer for our dilemma of sitting in our recliners and not being able to put down our beverages.  Not only found that in a color/wood we liked, but also a "C" table that solved the same problem for our couch.  Wonderful!

Saturday night, we went to an Amish family's house for dinner.  Spectacular food!  We finished the evening around the fire (with hard woods supplied by the campground, which was outstanding).


Sunday, our change of plans took effect.  We were supposed to roll over to Bethany's in laws to celebrate his birthday and spend the evening with them on our way to Goshen, IN.  Once the Monday appointments took place, we called our friends Don and April, who have a church behind their house, to see if we could bum a night there.  Worked out well, generator worked well, good night of boon docking (or "coon doggling" which is a long, funny story I won't get into).
Got business done Monday morning and took off to the Cleveland Clinic where I dropped Connie off for her appointments, then found a large church parking lot where the cabbies are all sitting, waiting for their next fare.
The girls and I will sit here until after Connie's appointments.  If she has no further appointments the rest of this week, we're heading to Indiana from here.  If she has to come back this week, we'll go back to Ashtabula and have to scuttle plans to do the rally.
I'll be blogging either tonight or tomorrow when I know.

You're going to be released shortly....

We were hoping Tuesday would be Connie's release day.  I purposely came a little later, so if we had to go late, the dogs would be OK.

At around 3p, the nurse came in and said he had orders for the release which would be done shortly.

"Shortly" was almost 3 hours later, but she was on her way home.  Not much else happened, we were still waiting on test results and no one was talking.

Wednesday, we started scheduling appointments, the first of which would be Monday to discuss results with Dr. Aponte.

Our friends, Fred and Vickie, wanted to come down Thursday to celebrate Connie's birthday, so we were going to have company!

So, what happens if one of you gets sick....

We get that question a lot.  Pretty easy answer:  we deal with it.

Our health insurance is provided through Bob's retirement through the State of Ohio.  Hardest thing has been establishing a "regular" doctor.  We get to a place in December, usually the first appointment (if they are accepting new patients at all) isn't available until late April or May.  Right about when we're leaving.

Vision, easy.  Dental, easy.  Vet for dogs, easy.  General practice, not so much.

Connie was having some pain in her clavicle and headaches.  Went to the Portland Urgent Care Clinic.  They kind of gave "take two aspirins and call us in the morning."  OK.  A week passed, the pain didn't so we went back.  They took a chest X-ray.  There were some spots on her lungs that the lab tech didn't like.  They suggested seeing an oncologist (Connie is a breast cancer survivor).

Again, the website our health insurance has shows all the doctors they're associated with because you're not getting in the door if they don't accept your health care provider.

Oncologist suggested more tests, mammogram, MRI's, etc.  Did that, lab techs didn't like what they saw again (but this time in her brain) and admitted her to the local hospital in Corpus Christi.  First question:  "Who's your regular doctor?"

Plans are on hold, not only need to deal with the brain part but still the spots on the lungs.  Where better than an RV located by the coast to rest and recuperate?

That's what we'll do!

You need to take your wife to the Emergency Room...

Today, Connie was scheduled to be in Corpus Christi at 8:30a for a brain MRI, a mammogram and a CT chest scan.  We have a follow up visit with Dr. Aponte, the oncologist, on Monday (the 25th).  The whole process was supposed to take about an hour and a half.

Nothing I could do, so I started driving around Corpus Christi playing Munzee, which is basically a 21st century scavenger hunt with a smart phone.  I thought it beat sitting in a waiting area for a couple of hours.  Connie had forwarded her cell phone to me, so all the business calls would come my way while she was being tested.

At about 9:45a, I got a call from Dr. Aponte wanting to tell me to take Connie to the Emergency Room at Christus Spohn Shoreline. I was pretty confused.  I was only about 10 minutes away from the imaging place.  Connie was inside waiting on them to make disks up to give to her and bring with her to the ER.  She said something on the brain MRI was troubling to the technician.

We went to the ER.  (Funny story, while we're waiting they called for "Guadalupe Something" four different times for four different Guadalupe's.)  Connie finally gets taken back, and we agreed that it was time to get the dogs taken care of since the admitting process would take a while.

I came back to Rockport and made arrangements for Carmen and Sloopy to be boarded at the Salty Dog here in Rockport.  They weren't quite used to having loose ends, but we got it worked out.  Whole process took about 2 hours.

By the time I got back, Connie was in a hallway and about to be transferred to a transitional area.  She had met with Dr. Aponte who said there was a mass on her brain that needed immediate treatment.  Connie was put on steroids (to shrink the swelling of the brain) and anti seizure meds right away.

We met that night with Dr. Gleason, who was a neurologist.  He showed us the pictures that had caused alarm and was going to recommend that Connie undergo Cyber Knife treatment for the large mass, and whole brain radiation for the additional small spots that were apparent.

I went home, and Connie was moved to a permanent room.