At home in Florida. All of my Doctor appointments are set up for here in Florida. Radiation will be here in Florida at the Moffitt Cancer Center, highly respected and about 1/2 hour away. It is a part of the University of South Florida Medical School and allot like UofM. Dr K set everything up through his contacts at Moffitt. I have a specialist in early stage small cell lung cancer, DR Thomas Dilling. The action starts January 15th. Feeling pretty good but taking it easy so far.

Day 2 is done, love the in and out compared to the first day of each round. Already have a Moffitt Doctor lined up thanks to DR Gregory Kalemkerian and his staff. 
DR Thomas Dilling, http://www.moffitt.org/meet-our-team/our-physicians/thomas-j-dilling-md

Good day overall.
Blood draw at 10:15 AM, Meeting with Dr K at 11:15, then things slowed down a little. Some old hag told us we were too early to check in for infusion. We were there at 11:15 AM and the appointment was at 12:30 PM. Picky, picky, picky. We knew we'd have to sit awhile, we or I am used to that. We then walked to the other end of the Cancer Center and then into the Radiology Records Department and got my scans and xrays to take to Florida. That passed enough time to register for infusion.

At the Dr K visit he was very receptive to my getting radiation treatments at the Moffitt Cancer Center on the north east side of Tampa. It is allot like the UofM Hospital because it is a part of the University of South Florida School of Medicine. As a research hospital it is very much like UofM. Dr K even knows 2 radiologists at Moffitt, DR Stevens and Dr Shridhar. He is going to talk to Dr Stevens and set things up, scans and treatment. I have found an affiliate in the New Port Richey / Brooksville area, closer yet.

Dr K had a long talk with me about how some radiologists recommend a preventive radiation treatment to the brain. He advised against it for 3 reasons, it only has a 5% benefit, it could cause more neurological damage to someone with a neurological problem to start with and my age.

Of course we ate at the Broadway Cafe. Cheese Steak Hoagie for me and soup for Irene. Turns out the soup is not chicken but beef broth, scallions and whipped eggs drizzled into the hot broth. Simple enough and really yummy.

Two more short infusion days coming Thursday and Friday. We may try to leave Friday afternoon and drive for 8 hours or so. FLORIDA HERE WE COME!

Appointment with the Neurology Department at UofM, Dr Jason Wong.
Of the 2 types of Eaton-Lambert (or Lambert-Eaton), I have the one that is usually brought on by a small cell lung cancer tumor. Treat the cancer and it tends to clear up fairly quickly. There are some other treatments that may help and they are being saved as future treatments, if needed. If the current treatment of Mestinon and Chemo do not work well.
They can include some plasma work, more IVIP and an experimental chemical called 3,4 DAP. These are used almost extensively for long term treatments. I was given 5 treatments of IVIP while in the Hospital at UofM.

The lead Doctor is thinking I won't need long term treatments and has agreed to wait a while longer.
They are thinking I should be back to doing most of what I want to do in 2 months or so.

Testing went very well, strength is coming back, reflexes have picked up. The reflexes they were very happy about.

November 27, 29 30  I will append this post for all 3 days.

November 30

Another quick day, not very crowded at the UofM Cancer Center. 
I asked the nurse if this treatment is considered an aggressive form of chemo. She said 'Yes!' I thought good, you either cure me or kill me, it's that simple. So far, it seems to be working. I'm a little weaker after today's treatment. Probably from getting up repeatedly last night to go to the bathroom. Chemo tends to try and clear out in 48 hours after it is administered. I guess you know what I'm doing until Monday Night!
(allot of pee'in)

We went back to the Broadway Cafe today afterwards. Irene had her soup and mine. I am definitely going to get a good recipe for Korean Chicken Soup, simple, but really good. I changed it up with sweet and sour chicken. It was more than I could eat and now have my dinner planned. Seems like everything comes with KimChi, like it or not!

November 29

Uneventful chemo session this afternoon. It went very well. I walked in and walked out of the session and it actually felt better than riding in a wheel chair, very invigorating! 
Afterwards, we went to the Broadway Cafe, Irene had chicken soup and I had the full BiBimBap dinner. Very good Korean food and yes, I had me some Kimchi! 
A primer on LEMS - http://en.wikipedia.org/wiki/Lambert%E2%80%93Eaton_myasthenic_syndrome

November 27

Chemo round 3 has started, 2 infusions today, 1 Friday and 1 Saturday.

The visit with Dr Gregory Kalemkerian and fellowship Dr Elizabeth Davis went well today. He said all numbers were in range and they seemed happy about it.  Of course, this is encouraging, but we really won't know much until the next scans, probably in January. This first scan after one round of chemo showed no cancer activity. 

I forgot to ask the Doctors about elevated heart rates after chemo. This morning it was 85, tonight 115 but has dropped to 108 - 112 after taking some Ativan. Vicodin works really well to lower it but I will wait until just before going to bed. I have sent a message to Dr Kalemkerian's office with this question.

The plan is for 5 to 6 weeks down time between the 4th chemo and the start of radiation. Some scans will be done in this down time period. 
Florida here we come, hopefully before Christmas. He kept saying that they will work the schedule out to our liking. We kept saying we will like anything they want to do and on their schedule. Our priority is to treat the cancer the most efficient way possible. He smiled about that, allot. 

The ride down to the Hospital in Ann Arbor is 111 miles from our drive to the parking ramp, 1 hour and 59 minutes. 

Afterwards, we wanted to get some BiBimBap, a Korean dish popular in Ann Arbor, but we tried to beat the rush hour traffic out of town instead. I guess 3 PM is too late a start. We got caught up in it but not to a dead stop. The traffic going into Ann Arbor was backed up from 14 along 23, then 96 all the way to Lansing. It looked really stressful.

Another argument with BCBS. They didn't want to pay for a BiPap machine. UofM Medical, UofM Sleep Disorders Lab, Sparrow Medical Supply and I against BCBS. We ended up winning after playing their silly games for 2 days. New Bipap, mask, hose, etc came home with me this afternoon. 

I am thankful to Sparrow Medical Supply and UofM Sleep Labs for doing battle with the bureaucracy known as Blue Cross Blue Shield. Thanks to them, especially Sparrow Medical, I have a new sleep apnea machine. Instead of a cpap, I now have a BiPap with settings comparable to what UofM CCU used to lower my co2 levels. The Respiratory Supervisor even hung up on them at one point during the argument.

Persistence pays off!

This is a complaint letter I wrote to Genesys Healthcare on November 2 2013 about refusing to admit me for breathing difficulties.

"I understand why there is a copay for ER visits with no admission but you nearly killed me by turning me away recently.

On Oct 10th, I visited Genesys ER with breathing problems. Someone decided not to admit me.

On Oct 11th, I was admitted to the University of Michigan Hospital with breathing problems which were quite severe. I was under respiratory failure with high co2 levels in my blood. I spent 1 1/2 days in the Critical Care Unit and 4 days overall in the hospital. Doesn’t sound like I should have been turned away now does it?

I do, however, give Genesys credit for finding small cell lung cancer in an earlier admission. Further treatment and testing at U of M has determined that the cancer is isolated and the prognosis is promising. I will have my second round of chemo the week of Nov 4, 2013 with 6 weeks of radiation to follow the chemo.

I will continue my treatments at the University Of Michigan Healthcare System and pay this copay under protest."

I just got off the phone with an complaint investigator from Genesys, seems an inquiry has erupted over this letter.

Hmmm...      ;-)

I finally got a test results letter from the UofM Sleep Disorders Lab.

They did a retitration on November 3rd. The results were inline with what my Oncologist expected. They are recommending a BiPap, humidifier, a wedge pillow and to sleep on my stomach or side. 

I currently use a cpap with a setting of 14. The bipap will be set at 25/16, big difference, but that was also the setting that they used in ER to get my co2 down. 

Tried today to track down the order and who the supplier will be. The letter also stated that I would be contacted in a few days to make arrangements for equipment delivery/pickup.

I hope I can finally get a good nights sleep with the new equipment. I've had so very few since Oct 3rd. I would imagine this is mostly anxiety and stress. I need stronger anti-anxiety/depression drugs! Xanax makes me jittery, go figure.

Note to self, don't eat too much before chemo. I was hungry and had 2 fish sandwiches on the way down to Ann Arbor. I didn't get sick, just a little queazy. I little snack is acceptable but a full stomach isn't a good idea.

Eating afterwards hasn't bothered me. A lot of this could be stress. Three days in a row the timing is off, late getting in the chair and hooked up anywhere from 45 minutes to 1.5 hours. We talked to the nurse and she said the only ones that are usually on time are the the early appointments.

I guess I have to chill out a little.

Why is it the chemo nurses are always worrying about constipation? HA! Not me, just the opposite and so far one short bout with it. Clean up aisle 7....lol

So far so good, everyone looks at me weird though, I don't use the heated blanket, it goes to Irene.

The first is carboplatin then etoposide. The second and third days just etoposide,   Anti nausea drugs 20 - 30 minutes before starting.

So far so good, I am getting stronger everyday and walking farther.
I plan on no wheel chairs at the Thanksgiving weekend chemo. Maybe the wheeled walker loaned to me by the family.

After this is over, it's radiation, 6 weeks, 5 days a week. I hope that goes as well.

It's pretty much automatic now.
God has let me know, 'We got this'!

Diabetics take note Etoposide and maybe all cancer chemo drugs screw with you sugar. When I got home at 6 PM 301, at 1 AM 134, eventually it comes back down.

Sleep study consult with Dr Swetha Voddi MD Sleep Medicine Fellow.
Explained to her what has happened so far and that Dr Kalamkarian thought it would be a good idea to change to a BiPap machine due to the co2 problems.

Appointment set up for November 3 2013 at the UofM Sleeps Disorders Lab.

November 3 2013

Slept fairly well until the Ambien wore off, then it was in and out the rest of the night. No report was given but I do have a follow up with Dr Voddi on
February 14 2013 @ 3 PM.

I could have swore that I woke up a couple of times and the machine was in BiPap, guess not.

Must not be urgent.

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.

I had been having trouble with leg weakness, weight loss, dry mouth and back pain since July 2013. After back xrays, spinal stenosis was suspected.

I was sent to physical therapy because insurance demands that before any kind of spinal surgery. The therapist assigned to me decided there was something internally wrong and to go back to my Doctor immediately. I think I owe her a BIG thank you and some flowers. We will look her up soon.

After telling my family Doctor about weight loss, fatigue and dry mouth he sent me to the ER for tests. He claims I never said anything about this before but I have a witness that say different, my wife.. It’s hard to deal with someone who doesn’t listen. Always take someone with you to appointments, it's harder for them to deny that way.

After 4 days of testing they found Small Cell Lung Cancer.