Another series of Chemo has started...6/27/2016

I thought I was going to meet with the Oncologist today, I did and he asked me when I wanted to start my chemo. I told him today and he was surprised. We earlier talked about going home to visit family. I told him cancer treatments have a higher priority for us.

So far it's tolerable, but rougher than carboplatin and etopocide. Here's what I'll be doing for 6 to 8 months.

Stinks for Irene, I can drive to Moffitt but not home. (gives you a hint on how strong The Taxol is they are giving me)

Every 3 weeks, starting yesterday, the 27th, a 3 hour infusion with Taxol for 6 to 8 months, here we go again...The 3 hours turn into 4+ hours depending whether or not I have a meeting with with my Oncologist, Bloodwork, CTScans, etc. (what ever test they can dream up)

I fell good for now, they gave me steroids, oh yea they work 
g o o d! Problem is sugar checked 202 this morning.
Keep me in your thoughts and prayers, I'm doing to need them. I have a good attitude about this and I can handle whatever comes my way.

I don't plan on giving up my involvement with St John's Episcopal Church in Brooksville until I feel that it would be best for the Parrish.


Mark A Johnson, Brooksville

Back on chemo and on schedule. Met with the Oncologist before chemo today. We are in round 2 with 2 days to go. 6 rounds altogether. No more Nuelasta due to my reaction to it. Tomorrow and Wednesday will wrap up round 2. CT Scan in December to check effectiveness. He did say that there are a couple other options if this chemo doesn't work like he wants.
Keep praying.

Taking infusion at home now, 3 times a day for the next 5 days. There are some nurses in big trouble at Bayfront. Dr Contreras was livid because he had it set up for release this morning. They were supposed to deliver the walker this morning, they screwed that up also, maybe tomorrow morning. They were on the spot with the infusion antibiotics though. While in the hospital, I was getting 3 - 4 hour infusions per day for a massive UTI, actually 2 different UTIs.  This was my second bout and worse than the first. I don't remember much of the 5 day ICU stay, 7 day stay altogether. I am very weak and a wheeled handicap walker is supposed to be on it's way to the house. I'm tired of these UTI's, every 2 years or so they try to kill me, this time was close. WBC was down to 1.1, should be around 7. I have a powered Pic line and they plan a port as soon as they think the infections are taken care of. Meanwhile the pic can be used for blood draw, scans and whatever. Old and sick is not a good combination.  

Another round we fought and won

I'm doing this for Mark and so that I don't forget.

On Thursday, Nov 6th Mark stated that he didn't feel good.  We gave him a non aspirin and later he couldn't get out of the chair.  At 1 am he fell out of bed and an ambulance was called.  He was admitted to ICU with a fever of 101 and an UTI on Friday morning at 3 am.  He was put on antibiotics and cat was put in.  Mark was ver disoriented and not reponsive.  By Saturday his temp had gone up to 103.8 and he was wrapped in ice and a cooling blanket added to his bed.  His temp went down to 101 and then up to 102.9.  At one point, he was slurring his words and his mouth started to droop.  The nurse got to him immediately and he was able respond but very slowly.  His brain was not letting him tell it what to do.  On Sunday, our minister, Father Ken, came and saw him and did a prayer for him. I got sent home by the nurse.   An oncologist called after I got home and said he would be fine.  When I walked in Monday morning, Mark was alert and talking.  It was like a light switched had been turned on.  His temp is now down to 96.7 to 98 and is staying there.  Yesterday, was the first time he was able to get out of bed and sit in a chair.  I told the nurse he would be able to walk but they won't let him yet.  I guess it's a Johnson thing according to Roxanne.  They are keeping him in ICU to make sure his white blood counts stay stable, which they have come back from 1.1 to 7.

The scans that were done show,  no cancer in the brain.  They are planning on putting in a power port Friday morning and then he will be able to come home.  He was up and got to walk to the nurses station today.  When he comes home, he will still have to have antibiotics 3 times a day.  Guess I'm going to learn how to do it.  They say it's easy.  Sure will be nice having him home again.

Next round of chemo is on the 23rd.

They had one heck of a time finding a vein today. The one they had for 2 days quit. At least it happened on the last day of the first cycle of treatment. They went to the left lower forearm near the wrist. Bad location and it blew out. Now it looks like they want to put in a chemo port. I really think it's the low seniority nurses working the weekends.
Now I have an OBI (On Board Injector). https://www.neulasta.com/on-body-injector/
It will inject something to help with white blood cell counts to fight off infections. They used to have you come back for a shot. After 27 hours it injects the medication for 45 minutes, then you take it off and put in into a medical waste container. I should be done with chemo for 3 weeks. They told me that between 7 and 14 days are when the immune system takes a dive and stay away from crowds. I guess I'm a hermit until chemo is done, 4 to 6 treatments, every 3 weeks.
The battle continues...

HERE WE GO AGAIN...

I received my liver biopsy results today at Moffitt.
Originally they thought the spot seen on the CT Scans was a fatty deposit. It turned out to be the Small Cell Lung Cancer that has spread. The lung Cancer hadn't been seen on the CT scans since Jan. 2014. The small spot showed up in April and July of this year, it hadn’t grown but they decided to do a biopsy on Oct 19th. I will have a PET and MRI scan on Thursday.

On top of everything else my son ART has B Cell Lymphoma Stage 4 and I'm stuck here.

I am starting chemo on Friday, Saturday and Sunday of this week. Chemo will be every 3 weeks for 3 days. 

My Medical Oncologist just called. He said there is definitely something going on with my Liver. Whatever it is, it hasn't grown in 6 months and small cell lung cancer grows fast. They want to do a needle biopsy to check and see if it's the Small Cell Lung Cancer that spread to the liver or a different kind of cancer, we'll see. He asked me how a felt, I feel fine, so if it is, it's early, hopefully, HERE WE GO AGAIN! To be honest, I always felt cancer was going to get me sooner or later. Hopefully later, much later. Whatever prayer list you have, add me to it, Please.

On September 18, 2015 I had an MRI on my liver. DR Tan at Moffitt was not that concerned because the spot has been there since my April CT Scans and has not grown. He just wanted to make sure it wasn't serious.
They were 2.5 hours behind at Moffitt on the MRI. DR Tan came out into the waiting room to tell us to go home and if it was something serious or needed following, he would call me. I guess no news is good news because I haven't heard anything yet.

Everything went well for my CT Scan on July 24, 2015. Lungs are still clear. They do have some concerns about a spot on my liver. They are pretty sure it's not cancer because the type I had is fast growing, if it spreads. The spot was there and the same size in the last scan, They think it is a fatty cyst which is common. A MRI in middle September will tell them what's up with that. It's always something, 'old age ain't for sissies'.
There is also concern about the LEMS hanging on so I have an appointment with a different Neurologist on the 28th, Dr Khouri at Moffitt. He may adjust or change the LEMS medication. If all goes well, we will be on our way home on the 29th or 30th.

I had my colonoscopy today. They use Suprep instead of Golightly here. Suprep is easier to take and you are flushed in about an hour.
DR Bin-Sagheer found 3 small polyps and said they looked fine. He will biopsy them and told me if everything is OK, 5 year return.

5th CT Scan and Blood work.

We went to Moffitt today for a check up. The scans were clear and the blood work normal but
Dr Dilling wants me to loose weight, no big surprise here.

He wants to stay on a 3 month schedule for checkups for a couple of years, so my next scheduled checkup will be the end of July.

I was also told that the LEMS may never go away. I am starting to look at diet but there isn't much information available. Maybe it's time to go see my neurological oncologist. He has an office in Brooksville along with Moffitt.

Either a very short trip to Michigan or wait until August to spend a couple of months visiting.

All in all, a good checkup.

4th CT SCAN

I had my 4th CT Scan today at Moffitt. Dr Dilling said there was no activity but he wants to watch 2 other nodules closely. He said allot of people have these 'benign' nodules and not to worry about it. The original cancerous nodule is not active and that part of the lung is clear.

The next CT Scan will be in 3 months and I will meet with a different Oncologist, DR Tan, the lead medical oncologist on my case. We are starting alternating consultations with DR Dilling and DR Tan.

All in all. very good news for me.

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.