I drove so much in the past 4 days, but I’m home.  Here’s how my appointment went.

It started with a fitful night’s sleep.  I’m guessing the gravity of my Phoenix bust was weighing on me and here I was far away from home with nothing but hope.

Turns out that I couldn’t have asked for anything better at this point.  The Doctor I had been emailing was wonderful.  He met me before hopping on a plane to the UK to give some presentations.

I answered lots of questions and he went over the trial.  The Trail Coordinator came in went over the consent form.  I signed it eagerly.  No one could promise at this point that I was official in the trial, but the process has a few more things before that happens.  For now, everything is a go and I’m just waiting on a date to take the Motorhome down there.  More paperwork and insurance approvals in the meantime.

The treatment is an immunotherapy drug via IV once a month.  Every two weeks, I’ll spend 3 days at the hospital getting radiation for 1 of 2 tumors.   They will pick two tumors in the beginning and target them exclusively.  Scans, Labs, and Doctors appointments in between.

If the treatment is effective for me, the trial is a year, so I would be in South Florida for a year.  If it stops working before then, I’ll be looking for other options.  For now, I’m just waiting to hear the official word.

The underside of a light in the hospital

Waiting to see the Doctor

Palm Beach

Palm Beach

Palm Beach

Tuesday’s Sunrise from Ponce de Leon

Happy Mileage 🙂

I have a chance on getting on a Clinical Trial.  I’ve been emailing a doctor in Miami and he’s been very responsive.  I met with my Oncologist Friday and found out my Cancer Markers have increased again.  They are at 2,400 now.  That’s an 800 increase, but it’s not the 64,000 I started with.

My Chemo options from the beginning were 3 different treatments and then you’re done.  Some trials are looking for people who have exhausted their first line treatment, but not started their second line treatment.  That’s me.

So if I get on this trial, I will have 1 more option to use up before using up my last two.  And if it extends my life, I might be able to get on another and then another.  Who knows.

The Doctor in Miami is going out of the country Monday afternoon and he will not be back until the 17th.  Because I need to get a treatment started soon, I agreed to a Monday morning at 8 a.m. appointment.  I appreciate him being eager enough to meet me on his departure day.

So Saturday morning, I packed up and started driving.  I stopped for the night in Tampa and some great friends (Thanks Kristie and Jean) are letting me stay the night in their beautiful home.  I’m blessed 🙂

Here’s to getting to Miami safely tomorrow.  My fingers are crossed that I’m qualified for the trial.  Then they’ll be crossed that the trial will be effective.  I have hope and hope is a wonderful thing 🙂

My travelling buddy

My first stop was gassing up at Buc-ee’s

Going into Florida

A Busy Bee near Lake City (Like Buc-ee’s)

Another rest stop

Hoping Happy Days are on the Way 🙂

I have Esophageal Varices from my compromised liver.  They are caused by high blood pressure in that area.  If you remember my Joe Cain dangerous bleed, my tumors had closed down an important vein and the other arteries and veins just couldn’t keep up with the blood flow.

Esophageal Varices are prone to bleed because they were created due to the high pressure.  My GI Doctor believes that I lost enough blood to reduce the pressure and that stopped this most current bleed.

My Conundrum

Chemo keeps me alive.  I have to have healthy blood numbers to do Chemo.  If I build up my blood again the pressures will increase.  That will cause more bleeding and my numbers will come down.  The bleeding should stop, but the numbers are down.  That’s not a good pattern for continuing the life saving Chemo.

Those problems remain to be seen.   Maybe they won’t bleed again.  This blog is my journey and I wanted to record where I’m at right now.  And where I’m at is that my blood numbers are low and I hope to build them up in the upcoming weeks and start the new Chemo treatments.

I haven’t had Chemo that worked for about 6 weeks now.  In the meantime, I feel pretty good and the current tumor growth hasn’t presented many issues.  But that’s borrowed time and wasted trips to Phoenix and internal bleeds are not good.  Not good at all.

Today is the day I should be going home.

Since I wrote all of that earlier, I have met with my surgeon and primary care doctors.  They feel like I need a unit of blood to jump start my numbers and get ready for my upcoming new Chemo treatments.  I’ll still be going home, just with more blood 🙂

Thanks again to my friends.  I love all of you and I can certainly tell all of you care for me.  It’s nice to be cared for by so many.  Here’s to going home, friends, Costo Steaks, and a cute little dog I’m missing.

I’m in the Hospital again.  I had so much fun yesterday at a party my friends threw for me and Michelle, but the whole while I knew I’d be heading to the Emergency room today.

Last week in Phoenix I could tell I was bleeding internally again.  Your poop can tell you things.  When it’s black tar you know your passing blood.  I knew.  My doctor here wanted me to go to the Emergency room in Phoenix, but when I got her message, I was boarding a plane.

So far, this isn’t the emergency like last time.  Then I was hemorrhaging and dizzy from the blood loss.  I feel pretty good now, but I’m still bleeding somewhere.

They are doing a GI Scope this afternoon to hopefully find and fix the problem.  I need it fixed because I need my bloodwork to get back up to par to start my new Chemo regimen soon.   Soon because my tumors are growing again and my liver is enlarged again.

I’m in a race and three laps behind and now I have a flat.  Hopefully it gets fixed and I can catch back up.

Don’t think I’m not still smiling.  I am and I will.  Life is too good not to smile 🙂

This was a tag in Mobile we saw as we were heading to the airport Tuesday morning….

We saw the Doctor this afternoon.  He was a great guy,  but was unsure as to why I came to see him.

Here goes:  I don’t have a lot of faith in people doing their jobs.

What I had hoped for was to walk into today and get a list of options that have been carefully prepared.  What I got was more like what I expected.  The Doctor quickly went over my history and huddled with some of his team and came back and told me there were no Clinical Trails available.  This was something that should have been decided before we bought plane tickets and rented lodging.

On a good note, I’m in their system and will have access to run things by him.  He’s a good man and it wasn’t his fault someone dropped the ball.  Another good thing is that I won’t have to leave everyone for months at a time.

We’ll come home and I’ll go on the 2nd treatment plan.  Hopefully that treatment will keep the tumors tamped down and maybe there will be some more options down the road…

 

Michelle and I are flying to Phoenix next week to meet with a Doctor at theVirginia Piper Cancer Center.  Hopefully he’ll have some more options for me.  My Doctor set it up saying my good health right now makes it a perfect time.

I have another Pet Scan Thursday to see if there has been any growth.

Having said all of that, today was my last treatment of Folfirinox.  It was good to me, but at this point, it seems it’s not working.  My Doctor upped the dosage in hopes that it will kick start it again.  We’ll see in a couple of weeks when I get a new CA 19-9 Blood Maker Test.

Today was a breeze.  Alicia came over and sat with me and the Benedrly got me high again.  And I cooked a delicious Ribeye when I got home 🙂

Thank you all the thoughts and prayers.   Always appreciated and needed so much now!

We were at the Doctors office this afternoon.  Earlier in the week, I found out my Blood Cancer Markers had risen from 1,000 to 1,600.  The last test saw a rise from 645 to 1,000.  I had blown that initial rise off on the 5 weeks I had off of Chemo.  I just knew I was going to get a year or more out of the first treatment, but it appears that it quit working at 6 months.

There are three treatments I can have.   Now there appears to be two treatments left.  It was a sobering thought simply because I feel great and the Chemo Cocktail that pulled me from the brink has now left me high and dry.

What’s next?  A Pet Scan next Thursday.   Possible traveling to a distant city to see another Doctor for a Clinical Trial fit.  I’m healthy and my Doctor said this is the time to seek other options.  So I’ll be going through some evaluations in the upcoming weeks to see what I’m eligible for.  I really hope those evaluations produce some good results.  I’m not ready to start the 2nd of 3 treatments yet.

In the meantime,  I feel good.  We’ll get all this figured out and I’ll keep fighting.  Maybe this time, I won’t be caught off guard when bad news hits.  Or maybe I will.  I don’t want to sit around counting my troubles when I can sit around counting my blessings 🙂

Stay tuned….

Hey Everyone.  Turns out I don’t have a choice…

I went to the Infirmary Cancer Center today to get my 11th treatment.  Because of my low platelets two weeks ago, I was almost sure that they would send me home.  Well logic bit me in the butt again today.  95 a month ago.  75 two weeks ago.  And 89 today.   I did eat a lot of steak recently.  So many variables in the medical field.  No matter, the 10th treatment was a go 🙂

Alicia came over and spent the day with me and my wonderful sister brought us lunch from Cracker Barrel.  Thanks Donna!!!!

I take Benadryl to prevent an adverse reaction to my last drug of the day.  I have noticed that my mouth neuropathy wasn’t a problem anymore.  Using logic, I thought maybe the Benadryl was doing it.  This time was logic was a win.  I didn’t soak my fingers and today after my treatment, I came home, pulled a carton of ice cream out of the freezer, and took a bite.  No tingling of the hands, fingers, or mouth 🙂

Oh, and Benadryl doesn’t make me sleepy, but it does get me high.  So this “adverse reaction, neuropathy killing” drug gives me a great buzz.  I have another reason to love treatment days.

“Another” reason?  Yep, it’s been six months since I was diagnosed.  6 months was the time I was given if I didn’t have treatments.  If you follow me on Facebook, you know I am living a good life and that’s BECAUSE of those treatments 🙂

 

I didn’t mention this in my latest entries, but my CA 19-9 went up recently from the low of 645 to a bit over 1000.  As  a reminder, the CA 19-9 is a Cancer Marker that is floating around in your blood.  Normal is below 35.  When I found out I had Cancer, they initial marker reading was 64,000.   I have been super proud and my body has been really responsive to go from 64,000 to 645.

My doctor mentioned that it could be that the cocktail I’m on (Folfirinox) is not working anymore.  He’s seen 6 to 8 months before Pancreatic Cancer starts mutating into a smarter way to keep growing (I picture a team of little tumor cancer scientist feverishly working on that)

My positive attitude isn’t going down that route.  I am thinking taking 5 weeks off (because you tried to bleed to death) would give the tumors a little time to grow.  I mean it’s 400 points!

I get my next CA 19-9 test at the end of this month and it will help tell the tale.  I had one treatment two weeks ago and I went in yesterday to get my second one this month (my 10th overall)  My platelets came back low and I almost didn’t get that 10th treatment.  My wonderful nurse called the Doctor and I had begged her to let me do it.  He agreed and the treatment was done without issue.

Another treatment two or three weeks from now wouldn’t affect the test.  We’ll get the CA 19-9 test at the end of the month and I’ll try using logic again to see where I’m heading.  I’m placing my bets on a number lower than 1,000.  If Folfirinox is working for you the studies indicate that it will work for couple of years (maybe).

I know this is long, but one more thing I have to add.  Of the two treatments I’ve had recently, I haven’t experienced Mouth Neuropathy with either one.  I still soak my hands and haven’t had Hand Neuropathy, but the ability to continue icing my drinks and eating ice cream has me puzzled.  I will admit to having some tingling in my feet these days.

One of my theories is that the big dose of Benedrly I now get before the “Bad Neuropathy” (remember my fancy allergic reaction I developed on my 8th treatment) is protecting me?  That wouldn’t explain the feet tingling, but maybe the Neuropathy HAS to go somewhere.  If it can’t get to the hands, it goes to the mouth, and if it can’t go to either, maybe it’s the feet?  No, but I’m happy about the hands and mouth and if I have to start soaking my feet… I will 🙂

The weather has warmed up and it’s been so nice to get out and do things.  Some times I get this feeling that I’m really not sick. I know I am, but I feel great.

At the 8K by the Bay

Lunch with my nephew Nathan

My daughter Ashley came over one afternoon 🙂

I took the Motorhome to Destin to see some great friends.  Bruno went with me 🙂

Walking in Destin

Jet skiing with my friends was so much fun!!

Me and Alicia at a Family Reunion

Family Reunion food 🙂

My Mom 🙂

At a Street Party Saturday night

I’ve got so many wonderful friends 🙂

That was a great two weeks in April!  I know it was two weeks because tomorrow I go and get the juice that keeps me going.  Tomorrow (Monday) is my next infusion and even though it is a pain in the butt, I can’t wait.

Seriously, I’ve recently read a sad story from a Pancreatic Cancer board.  A Dad at the age of 53 that was diagnosed in Nov 2018 had recently died.  According to the post, he had had Chemo treatments, but it just didn’t work for him.

I am beyond blessed that the particular cocktail of cancer-killing poisons I’m on are working so well.  It’s the prayers.  The love and support from uplifting friends.  The Doctors.  The Nurses.  The Fried Chicken and Ice Cream.

It’s all these things and I am so lucky.   Having said all that,  I’m ready for the next round 🙂