Bonus Month 1 in the books

It's been over a month now.

I think being off the chemo has given Connie a bit of a lift.  Her spirits are good.  She thinks she can do things (even though she often bails at the last minute). 

The brain is still her biggest problem.  Finding the right words, having a thought and not being able to finish it, etc.  Doesn't let her have good balance.  I'm starting to notice pretty large short term memory loss (we talked about a show this morning at pretty good length, tonight she didn't know what I was talking about).

Still a lot of sleep time.  A normal day is she's up at 8, in bed from noon-ish to 2-ish, down for bed around 7p.  Now that football is over, I'm catching up on a lot of Netflix and Prime Video.  Plus, the business has been hopping, which is really helpful.

Her appetite is as good as can be expected.  She has a breakfast, a snack, one of those Boost protein drinks, and a dinner.  All small portions, but at least she's eating.

Hospice nurses are here every day through the week at this point for 30-60 minutes.  We've got oxygen ready to roll, as we feel it's going to be a necessity and wanted it here for when that eventuality happens.

A few people have been nice enough to call, stop over, bake some things.  All of which is really appreciated.  I can run to the grocery, post office and not be a basket case if I time it around one of her naps or a nurse visit.  She actually sat out and watched a little football Sunday, along with going to the beach once for about 45 minutes.

That's pretty much the update, thanks for taking the time to think of my wife.

Bonus Day 4 (December 16th)

This was a doctor's appointment and a chemo treatment.  It wasn't a good day.  Connie couldn't make the walk with her walker from the rig to the truck.  It was tough to watch.  But, again, she was a trooper and gutted it out.  We used the wheelchair the rest of the day.

We met with her Oncologist and I told the story from the 12th.  He basically said the brain is starting to shut her body down.  On the 12th, it shut it down then restarted.  It would continue to happen until it couldn't restart and she'd be gone.

He gave us the option of doing the next two treatments, a week off, then meeting with him on the first Monday of the New Year.  However, he said things weren't going to get better.  In most cases, they were going to get worse and the shut downs would be more frequent.

The other option was to skip the treatment and consult Hospice.  He gave us time to talk and decide.

We talked.  We talked about when this all started (back in 2013), we would always opt for quality of life vs. quantity.  Right now, her quality was terrible.  She doesn't want to go to the beach.  She doesn't want to sit out in the sun.  She spends 12-16 hours in bed, the rest of the time in the recliner.  We decided we're at that point.  She simply said, "Let's go home."

With those 3 words, we began the end of our time together.

Bonus Days Begin (December 12th)

We went on a 3N cruise from Long Beach that was an inaugural for the Carnival Panorama.  Connie didn't handle any part of it well.  As usual, she was a trooper, but she probably spent more time in bed than out of it.  We both lost weight.  On a cruise.  Let that sink in.

I kidded her earlier in the week, that I didn't want her going all Titanic on me.  Today, it happened.  She said she had to use the bathroom, but had no use of her legs.  I quasi carried her to the bathroom, but she couldn't hold herself up to get on the toilet.  Then, she did what she went into the bathroom for.

I got her cleaned up and carried to the couch where she gave one big inhale, then a groan.  She was gone.  Then, she came back.  It was a matter of 3-5 seconds at most.  You would think passing away at sea for a cruise addict would be romantic.  It was freaking terrifying.

We got her back into bed, and she went to sleep.  I didn't know if it was the end or just another chapter.  Having done this 3 previous times, I knew that a ship's doctor couldn't do anything.  She either needed to sleep, or she was going to pass.  If I called in the Doctor, she was going to get off loaded in Mexico.  She would NOT have been happy.  I texted my daughter.  We both made the decision to ride it out.

It was the right call in the end.  And so, every day from here forward, is a Bonus Day with my wife.

Update on Connie, part whatever

A week ago Monday (October 14th), Connie had a treatment scheduled along with a visit with the Oncologist to discuss her two scans from the previous week of her full body and her brain.

As we've talked about before, chemo only works on the disease that's below the neck.  The scans showed very little progression, not enough to be concerned.  So the chemo has been working.  In the race for cancer to gain traction on my wife's body, right now the brain has taken the lead again.

The brain scans, however, showed "significant" progression.  His opinion was that the brain needed to be evaluated and we needed to go over things with our neuro oncologist at the Cleveland Clinic.  We got a "virtual visit" scheduled with them for today, Friday, the 25th.  He gave Connie the option of going through with the treatment or waiting till we've heard from the neuro surgeon.  She chose to skip the treatment on the 14th and 21st.  Basically, while keeping the body under check is necessary, if the brain gets too far ahead, it trumps the body.

It's really no different than the position we were in this past January, or the March the year before.

Met with the Neuro surgeon today via "virtual visit", and, similar to the last time, he can't tell if it's progression of the lesion or if it's radiation necrosis from past treatments.  We're going to do a month of steroids to reduce the swelling.  After that, around the week of Thanksgiving, we'll shoot new pictures of the brain.  We'll send those to Cleveland Clinic for assessment and do another virtual visit probably in the first two weeks of December.

Got Connie back on the chemo schedule a week from Monday, so she'll be resuming those.  We appreciate all the love and support.  While I don't answer everyone, please know that we're feeling the love.

Medical Update 2018

Been a while since we have updated the medical information.  When last we left, we were dealing with back pain.  They did confirm that when the kyphoplasty was done, some cement dripped near the spinal nerve.  Doctor prescribed Gabapentin which has helped.

Fast forward to TX.  Dr. ordered a PET scan to check things out.  Unfortunately, it shows progression in the lungs.  Going to have to go back on the heavy chemo (taxatere).  😡

A brain MRI was also ordered.  Again, not good news.  New activity in the previous area with some new activity in additional places.  Meeting with radiation oncologist to go over options.

Not a candidate for radiation as I have had too many doses previously.  Dr. said they typically don't see a patient 3 times for this.

Radiation is a risk, surgery is a risk.  Waiting for more info to determine our next course of action.

Physical Therapy

Had my very first physical therapy visit yesterday.  Was very interesting as we reviewed all my issues and conditions.  Since the therapist was part of the Cleveland Clinic, he had my history readily available.

Learned a lot about how to continue to ease the pain and strengthen my back.  Also learned I should be sleeping with a lot of pillows.

A little sore and stiff today, but I do think this is going to continue to get better.

Thanks to all for the well wishes!
Connie

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.

They Will Tell The Good News Over The Phone......

The "not good news" requires a visit to the office.

On March 24th, I went in for a follow up CT Scan of the chest and pelvic area.  Doctor wanted to see how the new treatment was working.  Was to get the results on April 9th at my scheduled visit.  Blood work was all coming back good, so we were only going to be required to go every 2 weeks instead of every week.  Great since we were getting ready to make a mini road trip to see more of Texas.

Was able to enjoy a nice dinner (March 25) at Moby Dicks in Port Aransas with our Heartland Owners Coastal Bend group.  While there, I received a call from the doctor wanting us to come in the next day.

As we expected, the news was not good.  The cancer has progressed in the lungs (larger and more) and a new area was found on the liver.  The doctor is recommending changing the treatment again to be even more aggressive.

Options are to start the treatment here in TX on April 9th (and stay until June for monitoring ) or head back to OH for the new treatment there.  We chose the second option.

At this time, I am waiting for the doctors in OH to get the information and schedule the necessary visits and treatments.  I will fly back as soon as we have more details from the Cleveland Clinic.  Bob will be heading back solo with the rig.

We will be passing along information as it becomes available.

Thanks again to all our friends and family.  We certainly appreciate all the love , support and prayers!