December 16, 2015 marks the start of the next chapter of my life.

On that day, I was diagnosed with Acute Myeloid Leukemia. I was shocked, surprised, scared, but most of all, relieved, because it helped to explain why I’d been feeling the way I had for the past few months, maybe even years.

I had been feeling really bad for the past few months. It started this summer. I had been sneezing a lot, mostly at work, and thought something was in the air; everyone in the office seemed to be coughing or sneezing. In September I started having a problem with my neck. It just stiffened up one day at work. I couldn’t turn my head, and had pain and tightness throughout my shoulders and back. I went to urgent care for that, and they took x-rays and prescribed a muscle relaxant. I was asked to follow up with my Primary Care Physician in two weeks. Unfortunately, he didn’t have any appointments for about 5 weeks (more on that later). We spoke by phone, and he said not to worry, that it was most likely just arthritis in my neck.

A few weeks later, the sneezing changed to a head cold. On October 17th, I had spent the entire Saturday outside – it was the day of the Michigan State vs. Michigan football game. I arrived in Ann Arbor early that day. I attended the ESPN College Game Day taping in the Diag, walked to the UM Golf Course for a tailgate party, then watched that awful game. I blamed the head cold on spending so much time outside that day – it was cold, and I was underdressed for part of the day.

To fight the head cold, I was taking OTC cough medicine. Soon, the head cold moved to my chest and I started having trouble breathing, soon after that it moved to my head again. I went back to urgent care. This time I was diagnosed with a sinus infection and prescribed an antibiotic. I was still sneezing, and I still had periodic back pain, which was managed with the muscle relaxant.

On November 13th, I finally had the appointment with my PCP. The sinus infection was gone, but I was still sneezing, still had periodic neck pain, and was having difficulty breathing. He started treating me for allergies with a nasal spray (Flonase), but didn’t look closer at the breathing problems. By this point, I was also starting to feel very run down.

A few weeks later, the sneezing was better, but I was still having trouble breathing, and I was tired all the time. I would sleep all weekend, and come home from work many days and go right to sleep. I attributed the tiredness to football being in full swing – pro football kept me up Sunday, Monday and Thursday nights, and college football kept me up (and out) on Saturdays. I tried going to bed earlier on non-football days. I found that I was still tired all the time, even after getting 10-12 hours sleep. Getting myself up in the morning for work was a chore.

On December 15th, a morning meeting was canceled and I decided to try to get a same day appointment with my PCP. He wasn’t available, and neither were any of the other doctors in his practice, so I went in to see a different doctor in Sterling Heights. That doctor checked my heart, took chest x-rays, gave me a nebulizer as a breathing treatment, but most importantly, had blood work done. About 7 pm that night, I got a call from him with my test results. The CBC (complete blood count) revealed low hemoglobin (which explained the tiredness), low platelets, and high white blood cell counts. He said that I should see a Hematologist immediately.

On December 16th, his office help to schedule an emergency appointment with the Hematologist. They did additional tests and took a bone marrow biopsy. This confirmed I had Acute Myeloid Leukemia. They asked me to check in that day… for a MONTH. What a shock. My son Brandon had a winter band concert scheduled for that evening, plus I needed time to talk with my wife, parents and siblings.

We attended the concert (which was fabulous by the way), and I told my parents and kids after. I checked in to Henry Ford Hospital the morning of December 17th.

The most difficult part for me throughout this process is thinking about my wife and kids, and whether I will be there for them as they grow up. I still don’t know exactly what an AML diagnosis means for me and the quality of my life going forward. I know I’ll need to go through a regimen of chemotherapy starting on Saturday. I’ll get 7 days of chemotherapy, then the remainder of my time will be spent waiting for my blood counts to go down to 0, then back up to normal. The goal is for me to stay in remission after that. I should be in decent shape during the process.

They said I’ll probably be out of work for at least 6 months – mostly just staying away from people, going to appointments, and getting lots of rest. It all depends on how things progress during and after my month in the hospital. I should be able to see my kids grow up. I just have to do my part to fight this thing.

I still have a million questions, and I know that I’m not the first person to go through this. I’ll document what I can to help those who start their fight after mine. My biggest pieces of advice so far:

  • Listen to your body. When you know something is wrong, get it checked out.
  • Ask your doctor questions, and ask if there is anything else they could be/should be checking, especially if you know that something is just not right. Get a CBC every year.
  • If you can’t get in to see your PCP, don’t wait. See someone else.
  • Hug your kids, and those that you love. I spent so much of my time worried about bills, chores and other day-to-day problems that I often missed finding joy in today.

What is Acute Myeloid Leukemia?

Adult acute myeloid leukemia (AML) is a type of cancer in which the bone marrow makes abnormal myeloblasts (a type of white blood cell), red blood cells, or platelets.

Adult acute myeloid leukemia (AML) is a cancer of the blood and bone marrow. This type of cancer usually gets worse quickly if it is not treated. It is the most common type of acute leukemia in adults. AML is also called acute myelogenous leukemia, acute myeloblastic leukemia, acute granulocytic leukemia, and acute nonlymphocytic leukemia.

Normally, the bone marrow makes blood stem cells (immature cells) that become mature blood cells over time. A blood stem cell may become a myeloid stem cell or a lymphoidstem cell. A lymphoid stem cell becomes a white blood cell.

A myeloid stem cell becomes one of three types of mature blood cells:

  • Red blood cells that carry oxygen and other substances to all tissues of the body.
  • White blood cells that fight infection and disease.
  • Platelets that form blood clots to stop bleeding.

In AML, the myeloid stem cells usually become a type of immature white blood cell called myeloblasts (or myeloid blasts). The myeloblasts in AML are abnormal and do not become healthy white blood cells. Sometimes in AML, too many stem cells become abnormal red blood cells or platelets. These abnormal white blood cells, red blood cells, or platelets are also called leukemia cells or blasts. Leukemia cells can build up in the bone marrow and blood so there is less room for healthy white blood cells, red blood cells, and platelets. When this happens, infection, anemia, or easy bleeding may occur. The leukemia cells can spread outside the blood to other parts of the body, including the central nervous system (brain and spinal cord), skin, and gums.

Source: National Cancer Institute (Adult Acute Myeloid Leukemia Treatment (PDQ®)–Patient Version

It’s been a while since I provided an update. As the saying goes… no news is good news. Things have been going very well with my eyes. I just got my new prescription and can see better now than at any time since my surgery (about 20/30). So let me step back and fill in my story since my last post. In the spring of last year I had another broken suture. It felt like I had a hair in my eye that I couldn’t rinse out. When I went to see my doctor, he ended removing the rest of my sutures – the running stitch and the outer sutures. I had some pain for a few days, and ended up going back about a week later because of redness and pain. He prescribed steroid drops for a few weeks, then I was fine. Removing the sutures definitely changed my vision. As my eyes settled, my prescription no longer matched my eye. I also didn’t have the up-close clear vision anymore; I used to be able to read up close small print very well with my corrected eye. I ended up getting reading glasses to help with the reading, a natural occurrence for those in their mid-40’s . I waited until this year to get a new prescription for my everyday glasses. With my new prescription I can see things pretty well. I still have some ghosting and blurriness, but I can make out street signs and license plates and read most text captions on the TV. I still have issues with my night vision, so I try not to drive at night, but I can if I have to. No rejection scares, and very little irritation. Things have been great.

A few days after my sutures were removed I was feeling a lot better. I was able to play a round of golf that Saturday and had a very busy Sunday. My the end of the day Sunday, I was tired. I stayed up a little later than I should have watching Sunday Night Football. On Monday, my eyes felt tired and were a little red. Monday night I stayed up a little late again, this time watching the news about the government shutdown. By Tuesday morning, my eyes were a little red and as the day went on left eye stayed red and started feeling a little worse. I went out for lunch, and that was when I noticed a little light sensitivity. I know that these are the symptoms to look out for, but I pushed through and just wanted to get to the end of the day so that I could go home and rest.

By the time I left work, I discovered that the light sensitivity was severe. I called Dr. Chow’s office during the drive home and spoke with the after-hours doctor. Given the symptoms, he said that I should go to the emergency room immediately. He told me to ask to see the Opthalmology resident to avoid getting the run-around from “regular” doctors and nurses. By the time I checked in, it felt like someone had stuck a needle in my eye. I just wanted to sit in a dark room.

About an hour after I arrived I was able to see the Opthalmology resident. He checked and rechecked my eyes. The bright lights were painful. It was so bad that shining a light in my good eye made my bad eye hurt! The “best” part was when he used the lens that looks like a magnifying glass to examine the back of my eye with a bright light. I can still feel that one 🙁

After the exam was completed and after he spoke with the after-hours doctor, I was diagnosed with Iritis, inflammation of the iris. Luckily, my cornea was in good shape and there was no infection. I was prescribed Pred Forte (the steroid drops that I took after the surgery), Homatropine (used to dilate the eye for comfort) and Erythromycin (an ophthalmic ointment). By the next morning, the redness and pain were gone. I want in to see Dr. Chow a couple of days later and things looked good. I’ll be on the Pred Forte for a month. Danger averted.

My lessons from this incident… stop staying up so late, and go to the doctor immediately if my eyes are red or if I notice light sensitivity.

My story began when I was in elementary school. I was diagnosed as being nearsighted and started wearing glasses in the third or fourth grade. I tried soft contact lenses in high school and the first year or so of college. Those were fine for a while, but then started to become unbearable. I could wear them for a few hours, then it felt like someone dumped sand in my eyes. As time progressed, I noticed that my eyes were becoming more sensitive to light and wind, so I actually preferred glasses.

I never had a problem getting prescriptions for glasses until the mid 90’s. I remember going to get an eye exam. My right eye was fine, but when my left eye was checked they could not find a setting to correct my vision. I remember going through the test – “Which is better… 1 or 2? 3 or 4?” It reached a point where all of the settings were out of focus and none of them corrected my vision. I was referred to an ophthalmologist.

My grandfather had been seeing an ophthalmologist named Dr. Bogorad at Henry Ford Hospital. I became his patient, and he was the one who diagnosed the problem – Keratoconus. I found out that Keratoconus is a very rare disease of the cornea. It is typically diagnosed in patients in their mid-twenties. Thinning of the cornea causes it to take on a cone-like shape that distorts vision. Vision becomes progressively worse, but it does not result in total blindness, and the vision changes slow down over time. It typically only affects one eye. The first course of treatment is rigid gas permeable contact lenses. The last course of treatment is a cornea transplant. There are other treatments available, some of which are still experimental.

When I told my parents, of course they were worried. Was I going to go blind? How did I get it? Is it painful? What options are available? Can I get LASIK? I tried to explain that there was nothing that could have been done to prevent it, and there is nothing that can be done to stop it. For me, it has always been an annoyance, but it isn’t painful. It just affected my night vision at that time. I have friends that have gotten LASIK, and I wish that was an option. Unfortunately it’s not recommended when the cornea is thin.

I tried the hard lenses in the late nineties. They corrected my vision better than the glasses, but the discomfort did not justify the benefit. I found that having vision that was slightly out of focus was more tolerable than the contact lenses. My glasses corrected my vision, but I started noticing distortions in my left eye. I was getting new glasses every two years or so, and when I had my prescription filled in late 90’s, I noticed that objects were skewed. When I held up a piece of paper, it didn’t look rectangular, it looked like this. I had the prescription tweaked a bit, but objects were still skewed. Eventually, from what I’ve been told, my brain began to process the signal differently and objects seemed to straighten out. I imagine that was when my right eye became the dominant eye.

Something else that I began to notice was that I saw multiple copies of objects. It was most noticeable in bright objects, like lights. I would see 4 or 5 instances of the objects, with motion trails, always with lots of glare. During the day I really didn’t notice it, but at night, taillights, headlights and streetlights all had that effect. Around the same time, I started to notice that I was having trouble with my night vision. I was staring to have a hard time reading street signs at night, and the glare from oncoming headlights was blinding. I couldn’t see street addresses from my car, which made it difficult to find houses and businesses. I remember being really late once picking up wedding photos with my wife because I couldn’t see the streets or addresses and went WAY out of the way.

My left eye was getting progressively worse and finally reached a point where the vision out of that eye was completely out of focus and uncorrectable. My right eye was compensating, so I could see during the day relatively well, but I no longer had any depth perception. This made some everyday things very difficult… try threading a needle with one eye! By the mid-2000’s, I was just dealing with it. My wife started doing most of the night driving.

I noticed my overall vision getting progressively worse. I started having difficulty with everyday things. For example, while watching football games on a 32” TV from about 10 feet away, I couldn’t see the score displayed on the television. That gave me an excuse to get an HDTV. I could still read standard sized print in books, but I had difficulty reading small type. To this day I still have to ask my wife to read small type.

I’ve noticed my right eye getting worse, although it is still correctable to 20/30 with glasses. The left eye is correctable to 20/1000 with glasses. I’ve noticed some of the things that I initially noticed in my left eye, such as ghosting and glare off of bright objects. It is difficult to explain to people what I see, especially people like my wife who are blessed with 20/20 vision. The best way to explain the night vision is that it’s like driving in a rain storm. You can still make out what is there, but things are distorted, and you can only see for a short distance. I also created a few pictures to try to illustrate what I see:

About 4 years ago I heard about a new alternative to cornea transplants called Intacs. It involves implanting a plastic ring in the cornea to correct the vision. I found a local cornea specialist who performs the surgery and scheduled a consultation. I found out immediately that my cornea had thinned too much and I was not a candidate. I started to think more seriously about having a cornea transplant. Before going that route, I wanted try contact lenses again. I was fitted for hard lenses, but they only corrected my vision to 20/70. Because they were still very uncomfortable and they still didn’t clear up the issues with night vision, I decided to continue using glasses.

Over the past few years, my overall vision has greatly diminished. My vision is good in outdoor sunlight, but as conditions darken my vision becomes exponentially worse. I am at the point where in an indoor setting it is difficult to recognize faces that are more than 30 feet away. It’s difficult when you can’t recognize people across the room, or when someone waves and you can’t tell who they are. Before this time, my life was only impacted at night. I am now at the point where my overall quality of life is affected.

In the fall of 2008, after trying contact lenses again and talking with my ophthalmologist, my physician and my optometrist, I scheduled a cornea transplant with my ophthalmologist. I have been seeing him for 4 years and he will be performing my surgery on January 26, 2009. I’ve talked with him about the surgery, and I’ve visited tons of web sites to find out more about the procedure. Some days I feel really good about it, and other days I don’t. I realize that this could be the best thing or the worst thing that I’ve ever done. This is a procedure where, once it’s done, there’s no going back. There is a long recovery time, and some risk. It could go very well, and I can have clear vision restored in my left eye, or it could be a procedure that I regret for the rest of my life. I could go on the way that things are, but I would love to be able to see the world with both eyes again.

My pre-operative visit is scheduled for this afternoon. I still have a bunch of questions:

  1. Will I be able to play golf in the spring?
  2. When will I be able to pick up my kids again?
  3. What happens with the prescription in my glasses during my recovery time?
  4. How much work do I need to miss?

I am looking forward to the surgery, which is now less than 2 weeks away. I will try to document my experience to help explain it to family and friends what is happening and how things are going.