#7 Learn about your disease

# 7 Learn about your disease

I was laying on my back in an older somewhat rickety hospital bed.  I had just had my first bone marrow biopsy and felt pretty overwhelmed.  I do have to admit I did have some feelings of pride and accomplishment when the nurse practitioner that had done the biopsy asked me if I worked out.  She said that she had twisted the needle trying to get it into my hip bone and she was impressed with my bone density.  Laying there to keep pressure on the hole they had made, I started to browse my phone.  I knew I had leukemia.  They had figured out that much since I had walked in that day.  I had probably been there all of two hours and they were still determining if I would have to be immediately hospitalized if it were acute leukemia or if maybe I could go home.  

I played with my phone a bit.  I perused facebook, scrolled through Instagram, but eventually curiosity got the better of me and I started to google “leukemia”.  I honestly didn’t even know how to spell it at the time.  My first stop in my search was cancer.org.  I thought that if I were really foolish enough to google it, I should at least look towards a credible source.  (If you give anything on the internet some sort of credibility.)  Glancing through, I got that there were three basic kinds of chronic leukemia and acute was just bad.  

I was still hesitant to even delve too deep because I didn’t know which type of leukemia I had.  Laying there on my back I alternated between staring at the ceiling and going back to my phone.  There was a lot of information to take in and I wasn’t quite ready for any of it.  

Between December 11th and December 18th, I had a couple of blood draws and they were looking at my white blood cell count, hemoglobin, and platelets.  My platelets weren’t dangerously low then but they were dropping.  My white blood cell count was over ten times what it was supposed to be and I was extremely anemic.  The week between those two appointments was also excruciatingly slow.  I go from being told I might have to be immediately admitted and started on chemo to “well, let’s just see.”  Completely the opposite of zero to sixty in 2.3 seconds.  Thus began the whole idea of hurry up and wait.  

It was on December 18th I was officially diagnosed with CMML.  Chronic myelomonocytic leukemia.  I had read a bit here and there about CMML but not as much as the other two.  CMML had been the lesser of the three that I would have been diagnosed with, statistically speaking.  Of the 1,100 people diagnosed in the US every year, only one out of ten are under the age of sixty.  You got that right.  I was essentially one of a hundred lucky winners that year of a blood disorder.  

Prior to this my extent in hospitals had been one surgery to repair a hernia and two overnight stays when my daughters had been born.  I was not medically inclined in the least.  I knew the basics well enough to help my personal training clients but if something outside of my scope of practice came up, I was quick to send them to a doctor.  I had some rudimentary idea of normal blood pressure, cholesterol, and other basic blood work but I was not ready for the torrent of data that would come with being a cancer patient.  Soon I would know WBC, RBC, ANC, platelets, ALT, creatinine, and whatever initials stand for the kitchen sink.  I asked questions, I read books, I selectively read the internet.  I highlight “selectively” because the only internet I read was approved by my doctor.  I know how the internet is.  

I must say that spending the time learning about my disease made it easier to talk to the doctors and nurses.  I wanted to know what the medications I was taking were for.  How had they come to that dosage?  Why this or that specific drug?  

As we got further along, I started to understand that the only real treatment for my leukemia was going to be a transplant.  I needed a donor.  There are two types of transplants for bone marrow patients, autologous and allogeneic.  Auto means that the stem cells can come from the same patient that will get the transplant.  Allogeneic means that the stem cells or bone marrow comes from another donor other than the patient needing the transplant.  I needed an allogeneic transplant.  My bone marrow was shitting the bed, so to speak.  Any hope of an autologous transplant was long gone as wonky as my bone marrow had gotten. (I can’t confirm that “wonky” is a technical term) 

In my prior life (pre-cancer), I had no idea that stem cell transplant and bone marrow transplant are essentially the same thing.  There can be some minor differences but the results are still the same.  The making of white blood cells, red blood cells, and platelets happen from the stem cells inside the bone marrow of the body.  Stem cells are the essential building blocks and they reside within the bone marrow.  This is all very simplistic, and maybe too simplistic, but it gives you an idea what is going on.  It also gives you an idea just how difficult some of this stuff is to understand.  

In hindsight, I wish I didn’t have to know these things.  Being that I can’t change it though, I took the effort to learn as much as I could.  At the end of the day, I am my own best health care advocate.  My wife loves me dearly.  My family loves me dearly.  However much they love me, I love myself more.  I want what is best for me.  I want to do what I can to beat this and never have to deal with this again.  It’s not that I don’t trust the doctors, but they don’t know me.  They try to get to know me, but at the end of the day, they have more patients to see.  At the end of the day, I have to go to sleep at night knowing I did or didn’t do everything that could help me.  Learning as much as possible about my disease was one of the best ways to arm myself with knowledge.   I then could use that knowledge to the best of my ability.  As I mentioned before, I was able to have a more in depth conversation with the doctors about what was happening and what would need to happen.  I could take a more active role in my recovery.  I was not content to just be an innocent bystander to my own care.  

More than just being an advocate for myself, I also like being prepared.  By knowing more about my disease I could learn some rough understanding of what I might have to go through.  When it was apparent that oral chemo was no longer working to keep the disease in check, the next step was the administration of intravenous (IV) chemotherapy drugs.  This meant getting some type of external line.  It was first considered that I would get a trifusion catheter placed when it looked like my transplant was near but upon closer inspection of my blood and bone marrow, it became apparent that my disease was just a little too far gone for that option just yet.  So instead I had a peripherally inserted central catheter (PICC line) placed.  This made it easier for nurses to draw blood or to give various transfusions or infusions.  I admit I was getting pretty tired of getting stuck with a needle two or three times a week (or more if I needed blood or platelets that required an IV).  The PICC line however still came with it’s ups and downs.  This meant learning how to care for it.  What I could and couldn’t do with it?  It was the same when I finally had the PICC line removed and had the trifusion catheter placed.  More care and more knowledge.  There was always something more to learn.  

Even months after getting my transplant, I’m still learning more about what my disease and subsequent treatment entails.  There’s new meds and new treatments for new symptoms or side effects.  My pill box is getting smaller but still more than I ever dreamed I would have to take.  

I will say that having a more active role in my own care and learning as much as I can about my own disease and it’s conditions has made me more capable of dealing with issues that have arisen.  There is still more I need to learn and I heavily lean on the doctors and nurses supervising my care.  Even my wife has needed to step in on my behalf from time to time.  This is not something I have been able to do on my own, so I’m grateful for her support.  She has learned what I have not, and I have learned things that she hasn’t.  Either on my own, or with someone, my care is greatly substantiated by knowledge.  Just as I wouldn’t want a doctor that has no knowledge of my disease, I’m sure my doctors would not want a patient with no knowledge.  I don’t seek to supplant my doctors but to help augment what they do.  Hopefully together we have a better chance of kicking this thing in the ass.