Monday, April 12, 2021

My Dad's Favorite Football Players

Growing up in central Upper Michigan, Green Bay, WI is only 100 miles away so many people are Packer fans. Detroit is 500 miles and the Mackinac bridge is the only thing that connects upper and lower Michigan. In fact, the Minnesota Vikings are closer to parts of the UP than Detroit, yet die hard locals are still Detroit Lions fans. This includes my Dad. 

Dennis Charette was born in 1951 in Kingsford, MI and has made it his home for the past 69 years. He has suffered through a lifetime of bad Lions football, which includes the longest draught in football for Super Bowl appearances. They last appeared in 1957 when they beat Cleveland in the NFL Championship Game, which predated the Super Bowl. 

Since then my Dad has had two favorite Lions players, ironically both running backs that wore #20, played college ball in the stage of Oklahoma, both here Heisman Trophy winners in their junior seasons, both were rookies of the year and they shared the same initials (B.S.) -- Billy Sims and Barry Sanders. When comparing each of their first two years in the league, they had very similar numbers. Sims had 2,740 yards with 26 touchdowns and Sanders had 2,774 yards and 27 touchdowns. Coincidentally, both players had very short NFL careers, with Sims retiring at age 29 due to injuries and Sanders retiring at age 30 by choice. 

When I was 6 years old, my parents went to a Lions-Packers game at Lambeau Field. The morning of the game, my Dad was in the elevator of the hotel going down to the lobby and who stepped in but Billy Sims himself. As luck would have it, my dad had bought me a gray lions zip up sweat shirt and it was in his hand. Billy was kind enough to autograph the sweatshirt. While I would grow up to be a Miami Dolphins fan (because of Dan Marino) this memento was has been pretty special to me all my life. 

As the signatures have faded over the years, my Mom will periodically go over them with a Sharpie to bring them back to life. She still has it in the cedar chest at their house and I bring it out from time to time when I visit. 

So the completion of the Billy Sims 1981 Topps rookie trifecta has brought back a lot of memories from my youth. I hope you enjoy the story and that this brings back memories of when you were a kid and you had special sports related memories with your father. 
  • #100 Bill Sims base card PSA 10 pop 60 
  • #338 Detroit Lions Team Leaders / Checklist PSA 10 pop 8 
  • #473 Billy Sims Super Action PSA 10 pop 13 
    

Monday, March 29, 2021

2nd Clinical Trial at NIH

It's official!

I have been enrolled as patient #4 in the NIH clinical trial for PRGN-2012 and will begin in May.  If this is the cure for RRP, not only will it be life-altering for me, but it will pave the way for all others after me.  

Sunday, March 7, 2021

The most difficult month of my life

This is the second part of the saga, where for a 10-day period, we weren't sure how long I had to live.  

When we last left off, my oncologist at University of Minnesota had performed a flow cytometry which resulted in ruling out leukemia.  They speculated that the interferon medication which I take for my recurrent respiratory papillomatosis had inexplicably reduced my white and red blood counts and my platelets.  So we planned to skip two more interferon treatments and test my blood again with expectation that my counts would rebound to their normal baselines.  

The CBC results on Tuesday, February 23rd did not show any improvement.  So the next step was to see a hematologist as soon as possible.  There was something causing my anemia and thrombocytopenia and my oncologist wanted to get the expert opinion of someone who specializes in diseases of the blood and blood components.  

Two days later I was back at University of Minnesota.  It was now Thursday, February 25th.  

My hematologist informed me that on the latest blood analysis, there were 15% of "other" cells appearing in the manual differential.  The "other" were classified as abnormal lymphocytes, which are immature forms of the cells which get released from the bone marrow into the circulation.  If 20% or more of the blood cells in your bone marrow are immature, you may be diagnosed with Acute Myeloid Leukemia (AML).  Treatment for AML involves multiple rounds of intensive chemotherapy.  It may go to into remission, but there is a chance it returns and while further chemotherapy treatment is possible, it likely will not be effective.  At that point, options are reduced to stem cell (bone marrow) transplant or clinical trials.  

Patients with the most lethal form of AML typically survive for only four to six months after diagnosis, even with aggressive chemotherapy.  The 5-year survival rate for people 20 and older with AML is about 25%.   I was within 5% of the level in which AML is diagnosed.  

Earlier results showed some levels of abnormal cells -- this is why the flow cytometry was performed in the first place.  But this was the first time that they showed up in this measurable amount.  To confirm the suspicious of AML, the next step was to conduct a bone marrow biopsy. 

After getting the news, I was frozen with fear. Before leaving the hospital I had to sit down as I needed a minute for everything to sink in.  I sat there for a solid 20 minutes before I was able to go to the parking lot and drive home.    

Six (long) days later I was back at University of Minnesota.  It was now Wednesday March 3rd. 

Bone marrow has a fluid portion and a more solid portion. In bone marrow aspiration, a needle is used to withdraw a sample of the fluid portion. In bone marrow biopsy, a needle is used to withdraw a sample of the solid portion.  The bone marrow fluid and tissue sample are usually collected from the top ridge of the back of a hipbone.  They first start by numbing the area, then they make a small incision in the skin of your lower back and insert a hollow needle through the outer bone into the marrow to collect the liquid, then a larger needle is used to collect a sample of the tissue.  Since I am young(er) and a (former) runner, my bones were very hard.  

With a lot of pressure to puncture the outer bone, the solid portion of the marrow was extracted.  However, when they performed the aspiration, it resulted in a "dry tap" which means they were unable to get any liquid out.  They tried several times in different places but were unsuccessful  A dry tap occurs only about 3% of the time, of which 92% of the time results in some form of pathology, which could be leukemia  So here I was, still days away from having the formal results, and we were already trending the wrong direction.  Fortunately, they were able to extra enough solid portion for the analysis. 

The procedure only took about an hour and I liken it to getting a tattoo where you are filled with adrenaline that eventually wears off and you crash.  For the next 36 hours it felt like I had a spike in my lower back.  When Rachel changed the dressing she said that it looked like I had a hole drilled into my back.  The hematologist said that it could take three to five days for result to come back.  More waiting.

We did have some positive news that came from the CBC which was performed before biopsy.  My lymphocytes were back up and my blood showed no "other" cells.  My basophils, eosinophils, monocytes and neutrophils were all in the low range of normal.  My platelets were at 105, which was a major improvement from the 86 they were at back on February 2nd when this whole ordeal began.  And my RBC was 4.06 -- still below the normal range but up from 3.6 a month earlier.  We tried to reserve our judgement until the biopsy results came in, but with no "other" cells showing up, maybe leukemia would once again be off the table. 

On Friday, March 5th we heading south in the late afternoon, driving toward Des Moines, Iowa where we were going to pick up our new beagle puppy early the next morning.  It was the 22nd anniversary of the day I left Michigan Tech as a electrical engineering graduate.  We had Fiina and Luna in the back of the Rover with us.  While listening to the Cubs preseason game against the Cleveland Indians, I saw a notification on my phone from the University of Minnesota medical app.  With a deep breath, I picked up my phone and opened the message. 

You know how there are some moments in your life that you will never forget where you were when you got certain news?  This was one of them.  We were in Story City, Iowa.  How fitting.

FINAL DIAGNOSIS:
Bone marrow, left posterior iliac crest, decalcified trephine biopsy, aspirate clot, touch imprint, and peripheral blood smear shows nincrease in myeloid blastsno abnormal myeloid blast, no aberrant immunophenotype on T cells, no morphologic or immunophenotypic evidence of hematolymphoid neoplasm with rare lymphoid aggregates, not diagnostic of lymphoma

It's not leukemia.  For the 2nd time. 

I handed the phone to Rachel for her to read the results and confirm.  It's not leukemia.  While I still wanted to be able to read the results again for myself, we both took a deep sigh of relief.  A little while later while at a rest stop, my hematologist called to confirm that the biopsy and aspiration looked normal.  She still did not know what caused the abnormal counts and appearance of immature cells, but it definitely was not a result of AML.  

We can positively, definitely say, without a shadow of a doubt, I do not have leukemia at this very moment in time.  Apparently I just had to drive to Iowa to find out. 

All of my doctors (my hematologist, my oncologist, my endocrinologist and my otolaryngologist) will meet early next week, but they all believe that this was caused by my continued use of interferon.  Since interferon alfa is a type of targeted cancer drug, patients usually don't take it for extended periods of time (like I have).  So the long term effects aren't really known.

So what is next?  If this was caused by my interferon, which I need for my RRP, does that mean we go back to having surgery every 6 weeks?  We certainly hope not.  I should find out in the next week if I am eligible for another clinical trial at NIH with Dr. Clint Allen.  As part of the trial, I would have to stop taking interferon anyway, and travel to Bethesda, MD where a trial vaccine would be administered.  We are hopeful that this is the answer, the cure, and we won't ever have to take interferon ever again.  

We thought that we might be writing the epilogue of my life story, but it turns out there are still many more chapters to be written.  

My wife Rachel has stood with me from the very beginning.  Even when faced with the worst, she said that we would face it together.  I will never be alone in this fight, no matter what comes next. 

You shoot me down but I won't fall, I am titanium.  

Sunday, February 14, 2021

Fight like hell

Four years ago was a turning point for me when I began a lifetime battle to fight for my life.  

Two weeks ago, I thought that I might have finally lost the war.

As chronicled in The Battle Wages On, the last hope for treatment of the incurable virus (Recurrent Respiratory Papillomatosis) plaguing my esophagus and lungs was a weekly injection of Interferon Alfa-2B.  This drug is administered in the form of a weekly subcutaneous injection.  

In one study, 70% (46 of 60) of patients had a response (35% had a complete response and 40% had a  partial response).  In my own case, for the 2 years before taking interferon I was having full sedation surgery every 6.77 weeks to have the virus removed.  Since starting the drug protocol 4 years ago, I have averaged surgery every 13.86 weeks and in the last two years the average has increased to 19.17 weeks.  

While these would be considered positive results, they do not come without a price.  Not only has the drug not prevented the spread of the virus into my lungs, I also have to deal with the side effects.  The most common side effects of interferon with severe expression include:   

  • Anemia, a condition in which you lack enough healthy red blood cells to carry adequate oxygen to your body's tissues and organs.
  • Thrombocytopenia, a condition in which your bone marrow makes too few blood platelets used for clotting. 
  • Leukopenia, a condition in which there is a decrease in disease-fighting (white blood) cells in your blood.

On Sunday, January 31st I started coughing up deep red, bloody mucus. Not just once but about a dozen times over the course of the entire day -- something I have never done before.  So I made an appointment to see my ENT the very next day, suspecting it could be an upper respiratory infection, or bronchitis.

A direct laryngoscopy showed that the virus was growing back with some irritation and redness in a mass in my trachea.  While this could have produced the bloody mucus, my doctor also ordered bloodwork and a CT scan of my chest.  Before I started taking interferon, my baseline for white blood cells was low, but this was reduced further as a side effect of the weekly injections.  The labs on this day showed the same, but for the first time ever my red blood cells were low, as were my platelets.  And the CT scan showed that I had a slightly enlarged spleen.  

I had taken my interferon on the same morning as the bloodwork so there was a chance that the labs were just showing the side effects of the interferon.  But there was also a chance that I had leukemia.

Leukemia.  

More specifically, acute myelogenous leukemia (AML) is a cancer of the blood and bone marrow.  The word "acute" denotes the disease's rapid progression.  The sixth-leading cause of cancer deaths has a  five-year survival rate of 65%, meaning 1 in 3 people will not make it to the five-year mark.  The median age of diagnosis being 66.  I just turned 45 in November,

Fast forward a week and we had more labs drawn, which showed very similar results.  Low WBC, low RBC, low platelets and there were rare small atypical looking lymphocytes with distinct nucleoli and rare form with irregular nucleus is seen, also a rare immature - appearing cells suspicious for a blast is seen.  

In the case of AML, there is an overproduction of abnormal myeloblasts. These cells are unable to develop further into mature white blood cells.  And I had some suspicious looking blasts in my test results.  

Now the thoughts of leukemia loomed even larger. 

Leukemia.

The next step was to conduct a flow cytometry which can identify the type of cells in a blood sample, including types of cancer cells based on either the presence or the absence of certain protein markers (antigens) on a cell’s surface.  For the second time in two days, it was back to the hospital for more blood draw.  With low blood pressure, taking 7 vials of blood took much longer than what it normally does.  

Finally on February 12th, twelve days and twelve sleepless nights after my first symptom, I got the test results.

There is no immunophenotypic evidence of non-Hodgkin lymphoma, lymphoid leukemia, or high grade myeloid neoplasm.  No aberrant immunophenotype on T cells.  CD34 positive blasts are rare to absent.

I had to read this sentence about a dozen times and had to Google all of the terms to make sure I fully understood what it said.  My oncologist further translated this to:

The flow cytometry was reassuring. It's pretty clear you don't have leukemia.  I think this is largely driven by interferon.

I don't have leukemia.   Deep sigh of relief. 

Our next course of action is to hold the interferon treatments for a while and then retest labs.  If my numbers bounce back, then we know it is the medication.  If they don't, then we are back to square one.  But let's say that it is the interferon that is causing my low counts... but I need the medication to slow the growth of the RRP virus.  This is known as a catch-22.  Are the benefits of the drug more than the side effects they produce? 

When the weight of the world feels like it is bearing down on you, it makes it very difficult to keep fighting.  For the first time in my life I can understand why some people give up.  When faced with the possibility of having leukemia, part of me wanted to just accept it.  It was very frightening.

But more of me wanted to fight.

At the 2014 Espy awards, Stuart Scott famously said, "So, live. Live. Fight like hell. And when you get too tired to fight then lay down and rest and let somebody else fight for you. That's also very, very important. I can't do this "don't give up" thing all by myself."  

My wife Rachel has stood with me from the very beginning.  Even when faced with the worst, she said that we would face it together.  I will never be alone in this fight, no matter what comes next. 

You shoot me down but I won't fall, I am titanium.