Our Priest was surprised to hear me say that I wasn't worried that much about death. At my low point in cancer treatments, maybe a little before that, I handed all that worry over to God. That's when recovery started. I still have a balance problem but it is getting better. I doubt if I will ever get off of the Mestinon.

Appointments at Moffitt and with DR Dilling. GOOD NEWS, 6 month scans are still showing no growth and cancer activity. Fatigue might be connected to the goiter attached to my thyroid which is calcified and no threat. Blood testing should show thyroid status. Another possibility is the LEMS not going away as fast as it should. He asked me to have my Primary DR Contreras check this next blood workup.

I had appointments at Moffitt yesterday with The Neurological and Head/Neck Oncologists.

The Neurological Doctor, DR Mohamad Iqbal Saleh, seems to be a really nice guy. He wants me to take an extra Mestinon if I start feeling run down. Followup is in 4 months but he said I can cancel if I'm feeling good.

The Head/Neck Doctor, DR Tapan A. Padhya said I didn't need to come and see him again unless I had a problem. He scoped my throat which is usually no big deal except this time he went in with no local anesthetic. OUCH!

A week ago I had Labs done for a 3 month diabetes check up with Dr Contreras of Brooksville. That is our southern doctor and our primary care physician since we are down here for such long periods of time each year.

My A1C is down to 5.9 and my blood pressure has been under 100 for a while.  He decided to try and get me off of Janumet and switch to Metformin for blood glucose control. He stated that we can always switch back and to keep what I have of the Janumet for a while. He also cut my Metoprolol dosage in half to try and get the blood pressure levels in a healthier range. Both of these could be contributing to the LEMS fatigue factor. (Lambert-Eaton Myasthenic Syndrome or Eaton-Lambert)

My thyroid gland has a golf ball sized growth on the end of it. At one time, a long time ago, it may have been cancerous but now is calcified and benign. As an oncologist in Michigan put it, "No one dies from thyroid cancer".

We talked about the Parathyroid glands, influenced by the Thyroid tumor, causing high calcium levels due to an elevated Parathyroid Hormone level. The Parathyroid glands are located behind the 'wings' of the thyroid in the neck. He said high calcium levels caused by the glands wasn't likely because he, Moffitt and UofM lab work has been looking at the calcium levels. High calcium would show up in lab work all the time.

He was kind of taken aback by my knowledge of what is happening in my body.

We now have handicap plates on all vehicles, in Florida and Michigan. (Yea!)

The news keeps getting better but I realize it can turn around in a very short period of time.

Keep praying, that's what I'm doing.

I've had some stressful days since last Wednesday with Positional dizziness. I went to the Doctor today and met with the Nurse Practitioner Lisa Ferguson, the MD's wife. She has a good sense of humor, I always jump and say ouch when she starts the examination. I've got her twice so far, this time she slapped me on the shoulder.

She knows my medical history and said we're not going to go off and start looking for cancer just yet. She asked me if I had allergies and of course I do, year around. There was allot of drainage in the throat and fluid collecting in the inner ear.

I received a steroid shot and she told me to take Claritin to help dry up the fluids. No follow up unless the dizziness persists. She said to give it a week or so.

I feel 100% better and it seems to have done the trick. I haven't had a dizzy spell since the shot. I think I'll be taking Claritin for a while.

We had a wonderful dinner and chat with Bryce, Mary, Mandy, Chad, Aubrey, Ally and Jacob. Best ribs I've had since Florida.

Smokin' Johnny V's Barbecue Bistro in Corunna.

I haven't posted anything in a while. I had my first 3 month scans in the end of June. Thank God they came back good. As my family doctor in Carson City, Dr Ferguson and the UofM Oncologist, Dr Kalemkerian put it, this is a very good report. No changes, no cancer.

The LEMS is still hanging around, I can piddle around the house one day but the next couple of days are spent recuperating. When I reach my limit my legs get wobbly and I have to rest.  I am hoping this lets up.

Travel is sort of hard on me also.

I started walking around the boundaries of the property today. It figures out to about 100 yards.

I called Dr Dilling's office today for prescription refills. As we were talking, I mentioned the extreme tiredness I am having to deal with. The nurse's comment was, "That will improve over time and is normal". We talked a little about the pain meds, I am down to oxycodone and no oxycontin. I knew that was coming and will be the last script from them for pain meds. Oh well, it was a fun ride while it lasted. She said to be as active as possible, don't become a couch potato.
I will be getting a CT scan in Michigan in July a 3 month check up. I have to have the clinic send the report in by fax. I think I will get a DVD copy to bring back also.
Other than this stuff, everything is going great. We plan on heading back to Michigan in early June and back home in early September, after Coralie's Birthday bash.

Long day. radiation and a Dr Dilling appointment this AM. They took pictures yesterday and they liked them. They don't like PT scans that much at Moffitt as a followup due to false positives. That's how I had throat biopsies, that were a false positive on a PT scan. They use CT scans and if something looks funny, then a PT scan. This limits false positives, saves money (insurance mandate) and limits radiation exposure. If you are not feeling, right, they will do them. Since November 2013, they have seen no PT activity. I had 1 in November 2013 and 1 in January 2014.

Everything is stable and I am feeling better by the day. If I miss a Mestinon dose, I hit a wall. They told me to not be afraid to take an extra dose if I need to. I am hoping the LEMS will completely recess but it isn't looking like it. It may be something to deal with the rest of my life.

After doing some research, I have found Myasthenia Gravis, LEMS and get this, Muscular Dystrophy very closely related. The MDA site is full of info about how these may be related. The medical field has long suspected this in research but have not yet to give a conclusive theory as to why or even if it's true.

I got kind of chewed out by the nurse, Oxy, I have two types, one long lasting and one for a boost, are to be taken on schedule. Now because of osteo-arthritis and bone spurs in my hip, they want me to take Naproxin (Aleve).

Dr Dilling was showing me a reduction schedule for the steroids I'm on for side effects of the PCI. I was looking at questions on my iPad and he said look here at this sheet and put that down for a minute. He was laughing his butt off at me.

Holy crap, the 60s all over again, fun, fun.

Half way through PCI. Things are going good since they put me on a Steroid to control brain swelling and the associated nausea. Trouble with that is a glucose reading of 150 and above is common. I'm supposed to give blood for a 3 month Diabetic checkup. It shouldn't bother the A1C much unless I'm on it too long. 

I think we will be going out to Bonefish Grill tomorrow to celebrate. :-)

This PCI crap is for the birds. Monster head ache and queazy on Monday. On Tuesdays we met with Dr Dilling, he said it is swelling in the brain gave me some steroids and they are working as far as the head aches and queasiness go. With 3 of 10 treatments done with, I hope this stuff is over with, sooner the better. This is a preventive treatment. There has been no evidence of Cancer since the first PT scan in November 2013. Another scan was negative in January 2014.

We met with our new Doctor. He spent about an hour and a half talking me and about an hour to Irene, including physicals. Young and seems knowledgeable enough, Dr Louis Contreras in Brooksville.

Irene's grandson Jake is coming for a visit the end of April. Should be fun, he's 19.

I had my Prophalactic Cranial Irradiation (PCI) simulation today at Moffitt. With the treatment the chances of the cancer reappearing in the brain is 20 - 25 %. Without the treatment it is a 60 - 65 % They make a plastic screen mold to go over your face and then fasten to the table. The actual treatments take about 3 or 4 minutes per session. 10 sessions in all. Then hopefully I'm done with treatments, FOREVER!!

We went back to Moffitt today for a MRI on the head. Small cell lung cancer likes to metastasize to the brain. This test showed no cancer activity. We are now planning on a preventive procedure called PCI or Prophylactic Cranial Irradiation. Without this procedure there is a 65% chance of metastasis to the brain, with this procedure, the chances drop to 25%. It is a 10 day low level radiation to the brain. This will probably start in early April.

The word from Dr Padhya is that NO cancer was found in the throat. Wonderful news!

Long day, up at 3:30 am, off to Moffitt for the biopsy. Dr Padhya tested several spots in the throat. His feelings are none of them looked Cancerous. Formal test results in a couple of days. They sent me home with some good stuff. They aren't stingy with the pain meds, that's for sure.

Things are looking better by the moment. Appointments through May, bummer, stuck in Florida until at least June. Whoa is me... :-)

Visit with DR Tan, Medical Oncologist, today at Moffitt. We compared the PET scans from October 2013 and January 2014. He said the cancer is gone. The radiation will continue to work for another 4 or 5 months. He also said that he had talked to DR Padhua, Neck and Head Cancer Specialist, about the throat and they both feel it is not cancer but would like to confirm this with a biopsy.

He also wants to do pre-emptive radiation to the head because small cell cancer likes to go there. It is a short course of 10 days and a low level of radiation.

It's too early to say the cancer is gone for good but this is sure as hell a step in the right direction. Negative tests for 3 years would be a better indication of a cure.

Well, here it is February 26th and radiation is finished, for now anyway. On the most recent PET scan there was a small uptake on the base of the tongue. This is new, and may be an anomaly or cancer. We will find out next week, the oncologist said it is rare but not uncommon to see lung and throat cancer at the same time. He is pretty amazed on how I do with treatment, he said, 'we'll treat that also, if that is what it is'. He did finally talk me into Oxy for pain.

I am also having a sciatic episode going on from playing the second round of golf since last August. I've had them before, so I know what they are like, not pleasant. I am having a CAT scan tomorrow on the hips to clear any thoughts of bone cancer.

I went and saw an excellent Chiropractor this afternoon, he also thinks it is the sciatic. He also got it to pop back in. Sore but feel much better.

I won't be interrupting my treatments this year to come back to Michigan. We will stay down here until it is done.

Radiation will start on February 5 2014 and run for 3 weeks. The first week they will schedule a biopsy for the throat. They said it is about a 15 minute deal, an in and out thing.

I guess if there ever was good news about cancer, this may be it. We just got back from Moffitt and they are looking at what they call a spark at the base of the tongue on the last PET scan. They did 2 scopes by 2 different Doctors on my throat looking at the sparking spot. So far this doesn't include the voice box and it seems clear by the eye. They noticed an anomoly at the base of the tongue. They don't seem to be in a big hurry to test it and may wait until my lung radiation is done. I don't know what the course will be, more chemo and radiation or just radiation. They aren't even sure if it is cancer but want to investigate it so they will know whether or not to ignore this spot in future scans.

I had a CT and PET scan on Monday. The results weren't what I was hoping for. We had one nurse tell us the usual therapy is 30 days of twice a day 6 hours apart, 5 days a week, 6 weeks total time excluding the weekends when they don't do radiation. Another nurse mentioned maybe once a day. Then Dr Thomas Dilling came in and stated the treatment will be 15 days, once a day, 3 weeks total time lapse. Each appointment is about 45 minutes long with 10 minutes on the table. They first have to make a mold for me to lay in and put tiny tattoos at the focal points. We are waiting for a phone call from the scheduler to get this done. There are some lymph nodes (3) in the middle of the chest that are still inflamed. They are going to hit them along with the area where the tumor was at. Here's the deal, with chemo there are microscopic tumors left behind. The chemo does a great job of shrinking the tumor(s) but it takes radiation to kill them off. After the treatment, I will need to get a CT and PET scan every 3 months.
The unexpected development was a flash on the PET scan in the back of the throat. He did a digital exam and could not feel anything. He said I did a good job of not gagging because he went pretty far down the throat. He said it could be a false positive from me coughing (which I don't remember doing) or even a swallow during the picture taking.  He stated that it is common for smokers or former smokers to have lung and throat cancers at the same time. They are different types of cancer and do not indicate a spreading of the lung cancer.
This is going to be a protracted fight.

Things are popping down here. CT scan at 2 PM and a PET scan at 5 PM Monday. They want it done before the appointment on Wednesday with the Radiologist Dr Dilling. I was told a Medical Oncologist will be assigned to me also. They operate the same way as UofM. The medical oncologist will be the primary care Doctor for the Cancer treatments.