Dr Hayman and the PET scan.

I had a PT or Pet Scan in the AM and met with DR Hayman in the PM.
He was late and that was driving me nuts. When he did come in, he was in a cheery mood. He said the cancer is in limited stage and it is very rare to catch it that early.

He agreed with me that LEMS may have saved my life. I could have been walking around while the cancer started spreading for several years, then it would be too late for much treatment but you always have to go done screaming about something, don't we.

Anyway we just went from 25% to 50% and he explained it a little better. He stated that if it comes back, it's within the first year and if it stays away 3 years, it most probably never return.

What a hell of a turnaround.

Dr Hayman had read the PET scan report but no radiologist had interpreted it yet. He said he saw no glaring problems, only good news.

Maybe this day or maybe the day after the PNA from DR Kalamkarian's office called and asked if DR Hayman told us about the PET scan report. She confirmed that the report was good and that nothing lit up the scan.

This much good news makes me, well?
Giddy to say the least.

We had a meeting with DR Kalamkarian, Oncologist.

He didn't sound very optimistic and scheduled a PET scan to see where we stood with the cancer.

Depressing meeting. He gave a 25% chance of survival.

October 15th discharge day!

A good share of the day was spent at the Neuro lab.

They did some tests to see how much damage was done to the nerve receptors in the proximal muscles.

I had fun and it was interesting, needles and current in the nerves. I'm weird like that. Someone had told them I had suspected LEMS and they asked how I figured that out. I told them to go to google and search on extreme fatigue and limb weakness. The results popped up a wikipedia article on LEMS with the first 3 results or so. They mumbled something about I should have been in research.

I told them that if I had their education, I probably wouldn't have worded it the same and not found it as easily. More laughter, one on the technicians finally wheeled me back to my room, transportation was requested a hour earlier and they hadn't sent them yet.

I got dressed to go home and had to go to the bathroom. Oops, passed a good sized kidney stone. The nurse took it to be analyzed. She couldn't believe it didn't hurt. When it rains, it pours on me. 

Oct 11th, 12th, 13th, 14th

Moved to CCU from the ER. When I arrived at the ER they did triage and decided to admit and treat me. My co2 levels were through the roof, in the 70s because of an autoimmune disorder Lambert–Eaton myasthenic syndrome (LEMS Lambert-Eaton syndrome or Eaton–Lambert syndrome).

In Flint, they had no idea what to do with the LEMS. The Doctors working on me when I came in, estimated I might have had ~2 hours left. Always go to the experts, if the Doctor you're working with appears puzzled, get away from him/her.

As it turns out, LEMS is a close relative to Myasthenia Gravis and research hospitals have had good luck with treating LEMS with MG medicines.
The way they got the co2 down was with a BiPap and medications.

Close one here, Irene had given them permission in incubate. I would keep fighting, when I would stop breathing I would wake up and the co2 levels started to recede.

I did get in one practical joke while in ER. I woke up with Irene and Tina staring at me. I slowly kind of leaned to one side like I was passing out. When they started yelling my name, I gave them a sly smile and a wink. A sense of humor is always a situation lightener. They both wanted to give me a swift kick but I think there were too many witnesses.

I spent 1.5 days in CCU. My weakness started to let up and was moved to floor 8. While there they started a pretty intensive chemo program that included 5 rounds of Intravenous immunoglobulin (IVIG), one infusion of Carboplatin and 3 infusions of Etoposide. 

I have nothing but love and respect for Dr Redmond, Dr Kalamkarian, Dr Hayman and others at UofM Healthcare. I had so many DRs and Interns talking to me, I could never name them all. I remember one intern, young women, I think her name was K. Levy, but I'm not sure. She was in and out of the room checking on me several times a day.

I have since changed my primary care to Dr Seth Ferguson in Carson City. I will use the excuse that he is closer to my home now that I have moved. 

Dr Danish Oncologist appointment debacle. He wanted to start chemo on Tuesday the next week and sent me to Genesys for a pic line. 

He said I had degenerated so fast he didn't think I would survive a port surgery. During the meeting my wife asked what to do if I got worse. DR Danish said to just deal with it. 

The same group of family was there, Jack, Tina, Jennifer, Art, Irene and I. Please forgive me if I forgot someone. Jack and Tina took Irene and I to Genesys to try and get a pick installed. 

We stopped in the Genesys parking lot and had a heart felt conversation about how we need get to UofM, NOW. I said Ok and we diverted to UofM. 

It was the best decision for what was going on and the lack of treatment. They asked me if I wanted to call the Doctors and tell them where we are going. You can guess my response to that question.

Dr Danish kept trying to call Irene's cell phone and she wouldn't answer, he finally got with my son Art and he told him I was in the UofM Hospital.

Dr Danish said he wanted to send me but didn't think I'd make it. What the F***!, ever hear of an air flight ambulance? I mean, if it's that serious!

Make your own assumptions here.  

I was refused admission at Genesys. I was very weak and suspected Eaton-Lambert Syndrome. 

I found this through web searches and found wikipedia articles. Later the interns at the Neuro lab at UofM asked how I figured that out.

They were amazed I could do that, mumbled something about I should have gone into research.

Dr Osman Saeed visit for Testing results and a plan to deal with this.

Jack Johnson, Tina Johnson, Art Johnson, Jennifer Johnson, Irene Johnson and I were present.

Oct 6, 2013 after over 10 years together, I surprised her in the middle of September with asking her if she would be my wife. She and I are very happy. 

The happiest I have been in a long time maybe ever. She is such a patient person, so loving, so giving. She is a perfect fit into my family.

At Irene's and had a breathing episode. (anxiety?)

We went to Carson City Hospital. They mentioned maybe COPD and gave me an inhaler, Albuterol.

Dr Kalamkarian Oncologist at UofM has followed this up with a prescription. It does open the bronchial tubes and makes breathing easier.

Discharged from Genesys with plans for chemo the next week. The problem with that plan is, I was degenerating quickly.