Saturday, April 9, 2016: Mike, Mystery Man

Diagnosis: we don't know.  We know a bunch of things the mouth and throat sores are NOT.  Not an infection. Not cancer. Not a virus.  One doctor seems set that the food pipe ulcers must have come from a pill getting stuck sideways for a while.  But that wouldn't explain the mouth ulcers.  They have taken him off the antibiotics and antiviral.

Discharge: there have been three plans so far!  So I won't even mention the latest possibility until, perhaps, we're walking/rolling out the door.  But he could discharge Monday.

He is getting nutrition through a PICC (central line) to give his mouth and throat a rest, but he can have "full diet" if he's up to it.

April 4, 2016: At the hospital

Mike has been dealing with mouth sores for one month now. They are extremely painful, to the point that has not eaten any solids, very little intake of softs/liquids, and very little water.  He started getting IV fluids every other day over the last two weeks.  

Yesterday he was doing so poorly I took him to the ER for fluids again (being Sunday, and no clinics open).  He was running a temperature (101) for this first time during all this.  They started fluids, which seemed to take forever before it started.  They also drew blood, took chest X-ray (no problems) and ordered other tests.  The doctor really didn't like how bad Mike looked, so they seem determined to get to the bottom of "it," and admitted him to the hospital (Meridian Park, in Tualatin). 

Mike has started having pain with swallowing, so the plan is to do a scope tomorrow - hopefully getting a definite diagnosis of what's going on and how to treat. 

Hello to whoever might be out there.  I know it's been a very long time since I've posted.  Thank you for your kind thoughts.

Monday, November 9: First maintenance

Mike had his first maintenance therapy today -- a very long session of Rituxin, the antibody/immunotherapy.  They give him Benadryl to prevent reactions, but that kicks of restless leg syndrome, really bad. He's a bit tired, but no heavy side effects should come up.
Doing it again in two months.
We had some fun this past weekend in Florence, a one night trip to see a cousin's daughter star in "Chicago." Bright, shining star!

Pic of pic

The darkest spots are the most "metobolically active."  The shoulders and neck are from arthritis.  Next down is the heart, then the right and left kidneys, and finally the bladder.
The cancer spot is between the heart and left kidney, a grayish mass, smaller than the heart.
There is a measure of the "uptake value," to assess how much of the tracer was picked up in each area. 20 would be a number for an aggressive cancer; Mike's was about 5.

October 26, 2015: Good news from PET scan.

The doctor is very encouraged by the PET scan results; so are we!  In short, there is one mass, and it is less than half the size from eight months ago.  The mass is also less dense -- thinner texture, if you will.  I took a picture of the picture, and I will work really hard to get it loaded here.  

Mike will never get rid of all the cancer.  But he will undergo a maintenance routine of immunotherapy once every two months (for two years) to keep the disease at bay.  This type of lymphoma is known to transform to be aggressive within ten years -- Mike would be 78 then -- and the immnotherapy should extend his timeframe even longer.

The doctor is still concerned about his general weakness and low iron, so she is referring him back to the gastroenterologist for possible tests.  

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In other Mike news, he saw the dentist today and will return Thursday for a filling.  They had a very long discussion about implant (Mike is scheduled for one next week) and/or removable bridge and//or permanent bridge.  Wish me luck in getting him to a decision soon.

AND in a couple of days he sees the dermatologist to have some Halloween carving on his ear.  
To be scheduled: follow-up with general practitioner; next neurologist check-in.

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Gratitude: The PET scan results, of course! 

New doctor is great

Mike and I were both impressed with the new oncologist. 

She spent a lot of time with us.  

She put missing information into his record (really, his medications weren't in there!).  
She told us what she was thinking, with pros and cons, AND asked what we were thinking.  
She told us what vaccinations Mike should get (flu) and not get (shingles). AND why.
She even explained why his kidney function is now normal instead of stage three kidney disease.
The enlarged lymph nodes can either be left as "wait and watch", or Mike can have the anti-body treatment to more actively work on keeping them from growing. She is going to order a PET scan. The scan will "light up" any areas where the cancer is active. We expect Mike will take the anti-body treatment once every two months; the scan might indicate if something more aggressive is called for.
His white blood cell counts are back to normal, and she believes this means the treatments have cleared the cancer from the bone marrow. But Mike still feels weak, so he will get a blood test on two specific items. The doc said any fatigue from the chemo should have passed by now.

Gratitude: This has been a beautiful summer.  Even September has been nice, with a couple of much needed rain days. We enjoyed the blood moon eclipse together. 

Wednesday, September 2: Wait and Watch

Doctor said, "Your enlarged lymph nodes have not decreased.  I just don't know what to think about that. You seemed to have had more response when we had you in the hospital for that week of really hard chemo."

I asked him to explain just where the nodes were, confirming that two near the trachea were gone. They are in the abdomen and pelvis.  "One is 15 millimeters, we'd much rather see centimeters. We'll just have to wait and see what happens." His blood counts were just a little low still, but much better than six months ago.

Then the doc switched to, "So, are you going to watch my sabbatical?"

Me: "You're having a sabbatical?

"My run for Governor."  A little political talk, mostly felt like he was practicing his stump speech.  Then back to Mike with, "I'll see you in about a month." As he was charging out the door I stopped him, "Hey, can he have the PICC remove?"
"Yes, sure, we will do that right here."

We went to scheduling, got an appointment (switching to a different doctor in the practice), and Mike got the PICC out.

Next week we will get to see the old farts -- I mean good old friends from Mike's professional days!

Wait and watch.  I prefer live and love.