Friday, September 25, 2015

CT Scan

The phone rang in the car...well I am surely never going to get used to having a cell phone that is connected via bluetooth to my vehicle...

Anyway we answered it and Rich talked to the doctor who did the prelim of his CT scan.

The doctor said "No evidence of cancer or a tumor." Although the scan did show evidence of a stroke that had probably occurred a few months ago.

If you need a reminder you can see the blog titled 911~what is your emergency?

I'm pretty sure this is the stroke they are talking about. So there was damage to the brain but nothing that showed up right away.
Let us not look a gift horse in the mouth.  

It felt like another elephant had been removed from our shoulders.
So as of yesterday Rich is free of cancer.  He kicked it in the butt with a lot of help from the Carbone Cancer Center and the VA.

Now we look forward and not backward.

Thursday, September 24, 2015

Nervous as ... well nervous CT Brain Scan

To say that the both of us are not on edge with waiting for the Brain CT Scan/with contrast is a misnomer.
Both of us are anxious.

Rich and I are both a bit short tempered and on edge. Both of us are tired and feel as though we are being dragged along again with something horrid hanging over our heads.

Of course he says he isn't.  But I know better.

Yesterday we went fishing for a little while.  While Rich fished, I walked around taking some photographs and then sat down on the steep bank, content just to watch Rich and talk with him.

The conversation was about anything and everything except the upcoming scan.

Yesterday I finally got all the 'ducks in a row' I think for the scan itself.
Get the required blood test at the VA, visit our VA appointment, then pick up the results to hand carry to the UW for the lab tech that is doing the CT.

Since the CT is being done so late in the day, apparently they will call with the results?

I don't know.  I would like the chance to look the doctor in the eyes while he discusses the scan results.

So another day of unknown will occur today.  

Hurry up and get 'tested'!!! Oh wait.  We'll get you the results...soon.

But I have to think positive as the scan results for throat cancer was clear.

Oh and the fish were not biting.  But I guess fishing is good even when the fish are not co-operative.  It gets you out into the fresh air and your mind is on something else.

Monday, September 21, 2015

New Scan coming up

The CT scan of the brain will be on Thursday this week.

Rich's comments about the latest developments are basically this:
"What next?"

At this point I am trying to get the VA and the UW to be able to 'communicate' with each other better.
I'm not sure that is possible.

So until later this week, keep your fingers crossed.

Friday, September 18, 2015

The Day After the Pet Scan Uh-ohhh

Dr. Witek called Rich the day after the PET scan.

"Our techs were going through your PET scan again and I need to know Rich if you've been having trouble with your eyesight?"

Rich said yes, but we of course hadn't linked any vision changes with anything other than the possibility of normal aging eyes.  The eye doctor had found cataracts too.  We'd told Dr. Morris about that the day earlier and he said that radiation could increase the time frame for cataracts if a person were to get them.

Apparently 'they' found 'something' in the occipital lobe of his brain.  The something was something they wanted to identify very soon.  Dr. Witek had put in an order for a CT scan of the area.  The 'techs' had wanted an MRI but Dr. Witek opted for the CT scan as Rich is very claustrophobic.

There was a knee jerk reaction in our household.  Our good news had turned into a 'Something'.  An unknown.  

We had to go to the VA for Dental, Swallow Clinic, and Mental Health yesterday.  Rich's Dentist did prep work for putting in some teeth to replace those he lost before the radiation therapy started.  Since the Dentist can't place a post in the jaw for partials, he had to make a work around. Radiation in throat and head makes the jaw bone brittle and no teeth can be pulled for about two years without causing huge issues.

Our appointment with Dr. Faris was perhaps the best appointment of the day.  Dr. Faris deserves a nod and some applause as he probably went way past his quitting time to hear Rich out.

He let Rich talk on and on about the Old Days and how he could do anything and everything.  His main complaint is of course how terrible things are for him because he has no energy.  After a long while Rich said out loud, "Maybe I am just getting old and I can't do the things I used to."

There it was, out in the open at least in my mind.  He is not 19 anymore nor 10 foot tall and bullet proof.  He admitted it.
I think it can be very difficult to face the fact that your life is not as it once was.

Dr. Feris discussed Palliative Care for Rich and he actually considered it. Palliative Care is not Hospice but is defined as special medical for people with serious illnesses.  It involves working with a special medical team that focuses on providing the patients with some relief from symptoms and stress from serious illness. The goal is to improve the quality of life for both the patient and the family of the patient.

I asked Rich on the ride home why he was always very negative when people asked how he was.  He didn't really have much of an answer.  I'm of the belief that if you always say you are not well, you will be unwell.

As for the Uh-Ohhh?  It is there and for the moment I am going to cope with it in the only manner I can.  Hope for the best, prepare for the worst, and don't freak out.  No knowledge is more fearful than having knowledge.

I know it is weighing heavily on Rich's mind.  But he told Dr. Feris yesterday that he didn't care, he was not afraid of it after all he has gone through.
We can all put on brave fronts in front of other people can we not?

The PET Scan

This PET Scan seemed so far off in the distant future when it was scheduled on June 15th.
Dr. Witek was pretty confident that he and his team plus the team at the VA had 'nailed' the throat cancer.

We all left the office that day with a good attitude.

Then came the PET day.  We were quiet while driving to Madison.  Of course what was on our minds?
What would the scan show?  Was the cancer gone really? Rich felt he should have tons of energy by now.  How come he didn't?

Both of us mentally asked ourselves questions as we drove to the Carbone Cancer Center.
What next?

The Scan went well and then we ate lunch at the UW Hospital cafeteria.  Rich was engaging and we nervously made little jokes about this and that.

We finally headed to the cancer treatment center and the waiting room.  

Fairly quickly a Dr. Morris and a Medical Assistant, both assigned to Dr. Witek came and got us.  They did the normal things blood pressure, questions, complaints and so forth.

Rich's biggest complaint was that he was still not energetic.  Yet he told Dr. Morris how he used to be able to do certain things like push a wheel barrow with a heavy hay bale in it, up a hill.  But now he had to stop and rest half way up.

Dr. Morris blinked and then said, "Man, you are doing far more than so many people that go through this, I would consider that you are out doing the chores as a huge positive."

Of course that fell on deaf ears.  I sometimes wonder if Rich doesn't think that the medical field will magically make him 19 again.  The period of time in which he could work tirelessly.  I don't think he understands that he is a 66 year old man that has health issues on top of cancer treatment recovery.

I agree with Dr. Morris, Rich's recovery compared to many other patients 'in his shoes' was indeed very good. He was doing things, he was eating foods that many patients never eat again.

Dr. Witek came in with the good news.  The PET Scan showed no cancer at all in the throat area, the scan was clean.
I can't tell you how much relief I felt at that moment. Clean?  That nearly felt impossible.

Rich?  He seemed non-pulsed by it in a way.
He complained again about his lack of energy and how things were never going to be normal or better than normal again. He was upset that he would have somewhat of a 'turkey neck' for the rest of his life and that perhaps his salvary glands may never come back to what they once where.

Even Dr. Witek at one point said to Rich, "Dude, you have to understand that you may have to live with these things the rest of your life, isn't that better than the alternative?"

Somehow that did not placate Rich.

But the evil little cells had been killed.  

Of course there is always a chance of the cancer returning in the next two years, and for the next two years we will be subjected to follow ups and more scans.

We went home.  I felt like an elephant had been lifted from my shoulders.

And I found myself going to bed wondering 'what is normal?'
Why complain about being alive?

But then, I am not the patient am I?

Tuesday, September 15, 2015

3 Months Out/PET Scan today

Shall I say that I am up early and worrying and have been worrying for about a week now?

The dreaded and much looked forward to PET scan is today at noon.
Results will be at 3:30 PM with Dr. Witek delivering the good news.
I'm sure they knocked out the throat cancer.  We are trying to only think positive but are prepared for the other diagnoses.

Rich has said if IT isn't gone,[cancer has become an IT now in the house], he would consider a simple option but could never subject himself to the hell that he/we went through again.  We'd seek palliative care.

Radiation in high exposures do cause some radiation sickness like symptoms.  The radiation can attack your red blood cells, affect your intestinal system, and the blood cells that produce bone marrow.

Rich is still recovering from his treatments.  The Carbone Cancer center used Tomotherapy which:

"An important distinction between tomotherapy and other radiation treatments is that past methods exposed much larger areas of the body to higher levels of radiation distributed from fewer angles. Tomotherapy, with its ability to deliver lower doses from many different angles, affects very limited areas of healthy tissue and results in fewer side effects." 
From the Tomotherapy Radiation Univ of WI Madison

 So the next few hours and days will be interesting and hopefully very joyful ones.

Thursday, September 10, 2015

Nearly 3 months out of Radiation

Rich had his once a year physical with his principle provider this past week.
She went over his med list and I gave her the CT scan results and ER results from the visit we made to the Boscobel Hospital two weeks ago.

His continued main complaint is exhaustion and being tired all of the time.

When dealing with a person who has had a horrible illness like cancer and especially the very difficult treatment regime that goes along with it, recovery can take a long time.
The chemo and radiation therapy took a heavy toll on him and he feels he should have bounced back quickly.

On the 15th of this month we have the PET scan.  I am nervously wringing my hands.  Questions fly through my mind while trying to go to sleep.

Is it all gone?  Is it going to be okay?
How are we going to deal with this tiredness?

Then we get a phone call from the clinic in Baraboo, they want to set up another CT scan as they read there was a lesion on Rich's right adrenal gland.
Okay.  I've done a bit of reading and this could be nothing, or it could be something.

Or in fact, it could help explain the sheer exhaustion that he has been having.

I read his last blood panel.  I wonder sometimes if a person could be too informed.  It is good to know your results, but then again, do those numbers really show the true health of the individual?  Do we really want to know exactly everything?  Would I want to add worry?

I think not.  Certain parts of his blood panels were high and others low.  However, his primary care doctor handed them to me to put in my file....and really didn't say much about the results.

His red blood cell count is still low but not significantly. She did mention that.

So now we wait until Tuesday. Both of us are on edge, Rich won't say it, but I know it is on his mind.

Thursday, September 3, 2015

Impatient Patient.

Well as Rich recovers we hit small set backs and tiny steps forward.
For him though it doesn't feel as though he is healing at all.

Part of the issue is our very hot and humid days.  They sap the strength out of patients who have had radiation treatment.
No matter how many times I remind him of the fact he remains unconvinced.

In his words he wants to recover and be 'better than before'.
However, given his age and health condition prior to treatment, that is a bit of a stretch and one he is not willing to accept.

We had several appointments this week at the VA hospital in Madison.  

His eye glasses were ordered which are good, he is having some trouble with his vision.  However we couldn't get any answer regarding his cataracts and what was the criteria for that.  The technician just stated that he would get a follow up appointment in about 6 months.

Pardon my skepticism, but since they were not able to locate his prescription from the 'outsourced' doctor, I know it will be up to us to follow up.
The eye clinic apparently is so overwhelmed that they cannot keep up with their services to the veterans.

Being a patient is a full time job, being the care taker of a patient sometimes seems more than full time.

We will be going to see Dr. Feris once a week for a while to try and work with the depression issue.  Dr. Feris is incredible and really knows his stuff.  However Rich has to cooperate a bit by not concentrating all of the time on 'the bad' in his life.

I'm not in his shoes, but I can see that a more positive attitude at this point is what he really needs and I don't know how to help him find that.

We were given some homework which I felt was rather helpful.  
I brought out the papers the last night and asked him to tell me what happened today that he felt pleasant.

Rich gave me a look.  And said, "Put that away, it is stupid, and I'll do it if I feel like it."

I suppose from my view point, I get discouraged with that attitude as it won't assist him in getting better at all.

When we talk about the Grand children or time spent with the kids, he positively lights up.  So I know that not everything in his life is negative.

But I tire of the same answer every single day.

"How are you?"
Grunt and a dirty look.
"Not worth a sh*t," is the daily mantra.

He is an impatient patient, looking for a fix that isn't there.

Dr's Feris and Cordes still feel part of the issues are stemming from biological problems and no mental health medication is going to fix that.
I agree with them 100%.

Get Rich off the farm and engaged in doing something enjoyable.