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 I 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 I would know it is the medication. If they don't, then I am 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."
With family and friends, 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.