How Life Changes

I was active.  I had been in the Army and the Air Force in my younger years and was always active.  I typically went up and down 10 lbs. in weight, but I always exercised.  I never ate very healthy though.  I was who I was.

A Back Story (your genes are YOUR genes)

For some time, I knew I was having high blood sugars.  My A1C was above 6 (6.6) the last time I went to the doctor.  In the couple of years that followed, I knew the next time I went to the doctor I would be an official Type 2 Diabetic.  To be truthful, no matter if you have an official diagnosis, you either are or you aren’t.  I was.  After a friend reintroduced the KETO diet to me, I went back and read books that I had read 20 years ago and instead of weight loss, I focused on Type 2 Diabetes.   I went into Ketosis (mostly fat and some protein) in July of 2017 and stayed in Ketosis.  Within a few months, my A1C was 6.0 and my blood sugars were coming down.  My only issue at that point was my current doctor did not believe me and did not support controlling my A1C through diet.

I reached out to a surgeon friend who recommended Dr. Coby Harrison at the Mobile Infirmary.  I went to her and she was very supportive of what I was doing and the following year and a half I saw 5.5 and 5.6 A1C’s.  She was proud of me and told me she has never had a patient that has been so dedicated to stay with a diet for so long.  I was proud that it was working and I was careful at all times to keep the fat up and the carbs low.  Only in the second half of 2018, I was pulling some high blood sugar numbers for no reason…

October 2018 (Trick or Treat)

I am not sure when I noticed that I had a sore spot in my abdomen.  At first, I thought it was diverticulitis, but I never ran a fever.  I have had two or three bouts of diverticulitis and it always has a sore spot and fever.  Michelle and I went to Colorado to see Alicia.  She was working at the YMCA of the Rockies.

Alicia commented later that I seemed fatigued.  I did not realize that my shortness of breath in the mountains was going to follow me back to Alabama.  I also never, ever lost weight on vacation.  Keto had kept me at a stable 173ish.  I had steadily lost on KETO from 205 to that 173.  I was feeling great because my blood sugar was low.  Seriously, I never realized how bad I was feeling with higher blood sugars until I got them down and stable.  But my weight started moving again and I was dropping into the high 160’s.

Let the Doctors do their job and quit guessing

The sore spot, shortness of breath, fatigue, and weight loss led me to surmise I had a hernia or ulcer.  Dr. Harrison helped me get an appointment with Dr. Sumana Kumarappa.  She is in the Gastroenterology field and when I saw her, she immediately ordered a Gastroscopy Procedure.  If she could not find anything on the inside of my stomach, she would order an ultrasound for the outside.

October 26^th,  The Day the World Turned Upside Down

My Gastroscopy was basically a bust.  No ulcer.  Just some slight irritation.  That was Thursday Oct 25^th.  I went to the Hospital early the next day for the Ultrasound.  I was surprised that the tech was able to pinpoint the exact location of my sore spot.  It had always taken me a minute or so to find it.  She buttered up that wand and after one pass, mashed it into the exact spot.  Had I only known what she was looking at…

I got back to Michelle’s house around 10 a.m. and immediately got a call from Dr. Kumarappa.  She was going out of town or she would have called me back to the hospital.  She told me I had cancer of the liver.  That my liver was eat up with many tumors.  I was dumbfounded, but not upset.  I wanted to know more.   I hung up and called Michelle.  She thought I was pranking her.  I wasn’t.  Dr. Kumarappa interrupted the call to tell me to look up Metastatic Liver Cancer.  Told me it was most likely coming from somewhere else.

Michelle came home and we did some crying.  Not much, but here I had went from healthy “I don’t need any medications – my diet is going to make me live forever”… to “I’m dying”

I struggled all weekend with questions about what doctor I would use and where I would receive treatments.  I messaged Dr. Harrison Monday and was able to get an appointment with her that afternoon.  She was unbelievably helpful.  She literally walked into the room saying she had thought about me all weekend.  She is the most kind and caring doctor I know.  She recommend Dr. Yunus there at the Mobile Infirmary.  Said he would send me to M.D. Anderson or U.A.B. if he thought it would help me.  Having her steer me in a direction lifted so much weight off my shoulders.

That week was a week of hell.  Dr. Yunus made it clear that I would be bedridden in 2 months and dead within 6 months without treatment!!!!   A couple of years maybe with treatment, but there was no rule, no surgery, no hope other than Chemo for the rest of what would be a short life.

Wow!  Of course, I chose treatments.  That started a chain of one-right-after-another tests.

• CT Scan to rule out the lungs
• MRI to rule out the Brain
• A PET scan to show all the tumors

And “Chemo Port Surgery” was supposed to be that Friday.  All the test were okay, but I was tired.  I was scared and I was declining in health almost daily.

Halloween in downtown Fairhope

My boss is amazing.  I went to his Halloween party that Saturday night like I’ve done for almost 20 years.  He called me aside and we both talked through tears.  I could not have ever asked to be friends (and work for) such a great guy.

I started running a fever of about 102 the day I went to see Dr. Kaci Simms for my Port Surgery.  I had driven from Mobile to Foley in a pouring rain.  The week of tests had been hell.  After waiting there in Dr. Simms office, they gave me the bad news.  They could not do the surgery the next day due to the possible nature of the fever.  I had just lost a week in my fight.

I was depressed, breathing shallow, tired, sore, and burning up with fever.  Dr. Yunus felt comfortable telling me it was not an infection, but a cancer fever.  By the next Friday, tests had confirmed Dr. Yunus and I had surgery for the “Chemo Port”.

A “Chemo Port” happens to be a small titanium box that has a membrane at the top.  It goes under just under a skin and has a line that goes straight into a vein.  When you have one, you can get one needle stick and then no more sticks (even if you have a day full of sticks)

I had “side effect” medicines on hand and I was ready for treatments starting Monday.

Fears

The emotions that we through that week of tests and fever were all over the map.  After 7 years of dating, I talked about marriage with Michelle.  I had always had a house in Daphne and always spent the weekends in Mobile.  Love is love and it was time to finish our courtship and make it official.  I asked her to marry me!

She has a running joke that I was marrying her for my “green card”  She had good insurance and was close to the hospital.  Hahaha.  Seriously, I knew that at some point, I would not be able to work and I knew that Chelley would take care of me.  We were meant to be together forever.  Forever was just closer now.

After my first treatment

We got a beautiful puppy in November (Bruno, a Frenchton)

Alicia and I at Thanksgiving

All normal pictures from our normal events.  But you know what wasn’t normal?  Weight loss.  Before the 1^st treatment, I was monitoring my weight.  162 now.  161.  Then in one night, I was 153.  I thought it was a mistake, but the next day I was 152.  Cancer sucks!  I started upping my eating game to hold on.  I got some amino acids to help (HMB and Glutamine) retain the super weak muscles I had.  Cancer was eating me.

Treatments 1, 2 and 3

You walk into the Cancer Center, sign in, and they call you back.  There are rows of chairs on each side of the room and you sit there all day with medicines dripping into you.  The room stays full of people and sometimes there are smiles and small talk.  They have iPads on each chair with a TV option and I found out early that everyone might be watching a different channel loudly.  The 2^nd treatment had me connecting my Bluetooth headset to my iPad and watching Netflix all day.

After my day of bags of medicine being infused, I am sent home with a pump with another chemo medicine to be put in slowly.  After 48 hours, I have to go back to the Cancer Center to get the pump removed.

No ill effects so far (see below for the nitty gritty).  I will say that the day of the all-day infusion, I am less than feeling good, but not so much that I can pinpoint anything other than an all-day infusion of toxic drugs.  I just finish that day not feeling my best.  I also don’t sleep well those nights.

That gets better and when the pump comes off, I feel better and better.  I get the treatments every other Monday and I get about 10 days of no medicine.  No nausea.  No diarrhea.  No “I have to stay in bed”, and a fine appetite!  I am happy to say after 3 treatments, I’d climbed back up to 166

All of my symptoms were gone.  Deep breaths returned.  No fevers.  I was back to normal!

The Nitty Gritty is that I do have one side effect, but I will take the shrinkage of tumors over this issue.  Peripheral Neuropathy.  My fingers go numb when I touch anything cold.  That went from the fridge (1^st treatment) to just using a fork (3^rd treatment)!

Real Time (December 27, 2018)

I had my 4^th treatment the day after Christmas.  I usually have it every other Monday, but the Cancer Center was closed Monday.  My treatment went well.  Alicia came by and sat with me.  I ate Christmas Goodies Mom made all day.  My last Chemo bag was the one who causes the Neuropathy and sure enough, it was worse again.  My fingers were tingling before the bag ended.

I wrote the previous paragraph at 3:50 a.m.  I’ve been up since 11:30.  Made coffee at 12:30.  Cooked some sausage and had waffles and sausage at 2:30.  Seems this is an every other week event also.  Take bags of Chemo and Steroids all day and don’t sleep that night.  I will catch a nap later and should sleep fine tonight.  Tomorrow, I will get this pump off and start about 9 days with no medicine going in.  Yay!

One other thing.  I have been wondering something.  If my symptoms are gone and we stay on top of that, what (and when) will the big decline start?  Patrick Swayze did a great interview with Barbara Walters and he was in the middle of his 20 months.  He was feeling like a miracle because he had made it almost a year.  20 months was the total time from his diagnosis to his death.  That was about 8 years ago, so who knows how long I have.  I am a programmer though and I am thinking with logic and not emotions.  I am not afraid to die.  I just like information and the information I am finding on Stage 4 Pancreatic Cancer is not promising, even with treatments.

December 28, 2018

I get my pump off today. I am going to get some fluids afterwards.  Last time, an older guy said that getting fluids helped him recover from the Chemo so much faster.  That would be nice!

December 29^th

Not a fan of a bag of fluid at the end of the treatment.  I had to pee a few times in my short sleep cycle and wound up wide awake at midnight.  No sleep afterwards.  I spent Saturday napping after Breakfast and again after Lunch.  I went to John’s for the Alabama / Oklahoma game and had a great time

December 30^th

The Neuropathy is still strong, but is better each day afterwards.  I still nap after breakfast, but I think today was because I got home late after the game last night.  It has been a good day.  I went to Prohealth at the Hospital and walked about 30 minutes.  I also saw this and plan on upping my exercise game

December 31^st 2018

I went downtown to pick up some to-go lunches for us and ran into Ryan.  He came up to me and said “How are you doing?”

I said “Fine”…. Then “You heard about my Cancer?”.  He said “yes”.  We talked and laughed for a while and during that time, he could tell it was the same old me.

I guess that is why I tell my friends.  Not for pity, but if they already know and ask how I’m doing, I want them to know HOW I’m doing.  Ryan seemed really glad to hear my positive results so far

January 2^nd 2019

I have noticed that I cannot tolerate spicy food like I used too.  I also am developing some mouth sores.  The other day Alicia told me I was bleeding.  It was from the corners of my mouth.  I thought then that winter had me dried out.  Nope, it healed and now with the latest treatment, the corners of my mouth are cracked.  Nothing Vaseline won’t fix and nothing bad enough to keep me from still eating.  However, I am seeing that I can’t escape all the issues that come with the poison.  Poison?  Yes!  Kill the cancer and stay alive.  It’s a balance that you have to live with…. Or not

January 8^th, 2019

I had my 5^th treatment Monday.  That was yesterday and I still have the pump on.  Leucovorin (a drug to help manage the Chemo), Camptosar (Chemo), Oxiliplatin (Chemo that causes the Neuropathy) , and the pump pushes Fluorouracil (Chemo).

See the figures above.  My CA 19-9 Cancer Blood Markers (normal is below 35) were 64,470 before treatments!!!!!  After my 4^th, it had dropped to 19,889.  That confirms my feeling better

January 11, 2019

Just saw my Doctor.  He was so happy at how I was doing.  I’ve gained more weight and am managing my minor side effects.  We talked about the CA 19-9 test and admitted that he rarely has seen the high numbers I started with.  But he was so happy with the drop and he said he was surprised at how good I’m doing.

He also told me around 8 months, it’s typical to see a decline in the current treatments and he will have to start a different treatment (all Chemo).  So time is limited on this “feeling good”, but maybe when this treatment starts failing, the new one will start kicking ass.  I can only be hopeful that my success will continue.