I was diagnosed with Myelodysplastic Syndrome

Posted: June 11, 2017 in The Battle Against MDS

It has been several days since I got the phone call. I knew it wouldn’t be good, but hoped it would be better. Dr. Crump, my doctor at PMH, specializes in lymphoma, but two-and-a-half years ago had ruled out lymphoma. He called me personally on Friday evening before the long weekend. I was with my kids. My eight-year-old daughter, Avery, answered the phone.

Lymphoma had been ruled out (after originally being misdiagnosed). Fibrosis was mentioned, but ruled out. However, my blood counts were all too low: white blood cells, neutraphils, platelets, immunoglobulins. They would monitor it and if it changes then they could better determine. So every six months I would go in for blood work. Every six months there was no change – counts were still low. On May 8 though, that changed. They got lower. About 30% lower. So an immediate bone marrow biopsy was done and on May 19 I got this phone call.

I have Myelodysplasia.

Dr. Crump explained what it was. And how it could develop into leukemia. My family doctor, the day before, had explained that they were looking into it being dysplasia and had described it as the same thing. Both seemed concerned that it would develop into leukemia. This gave me the impression that it wasn’t as bad, but it could get bad. I got off the phone. Dr. Crump seemed to wait for added questions, but I didn’t have many other than the “next steps” question (basically, he would refer me across the hall to the Hematology clinic, and mentioned a Dr. Yee).

Had I spent even two minutes researching MDS, I would have had more questions and I regret getting off the phone in 15 minutes when he clearly would have given me more time.

So I got off the phone and looked it up. And became gravely concerned. Shattered. Paralyzed. My office door was shut, the kids were in the living room playing, laughing. My wife was texting me asking if I was on the phone because she couldn’t get through. I texted back that I was talking to Dr. Crump. I have Myelodysplasia. She was commuting home, and immediately looked it up herself.

She wanted to call, I asked her to give me a minute.

The more I read, the more panicked I became. And confused. Why on earth would the doctors care if this turned into leukemia? This seems to be worse than leukemia! Leukemia is an upgrade!

I emailed my family: parents, two sisters. I asked them not to call that day, but just to digest – and keep in mind that what they read on the Internet were projections that revolved around the average age of diagnosis for this was 70 – or else they were former cancer patients who had radiation treatment. I’m sure I was also telling myself that. Calming myself down.

But there was no way that I could handle a phone call. I felt tight. Anxious. Scared. Sad. Crying. Lots of crying. Mostly for my daughters Avery and Mackenzie. They are eight and six. Will I see them turn 10 and eight? Will they remember their father when they are in their 30s?

My wife came home and we went upstairs to hug and cry. My plan was to get my work done as quickly as possible. Who knows what treatments were coming, and when? The kids have been getting extra hugs and kisses. And “I love yous”.

After they were in bed, I tried to do work. Focusing was hard, but when I focused – the tightness eased. My Fantasy Prospects Report was due on June 1, but I was ahead. As I write this on May 23rd, the FPR is almost completely done. A week early.

Anyway, that night I emailed my closest friend Alex with the diagnosis. Alex had beat cancer. He had non-Hodgkins lymphoma, Stage IV Mantle Cell seven years ago. And he beat it with a stem-cell transplant. An inspiration.

On Saturday the 20th, I had calmed down, but only a little. Still, I couldn’t leave my parents hanging any longer so I had to be strong and call them. They had called me, but I didn’t answer as I was about to walk Avery down the street to a birthday party. So I had the entire walk back to collect myself. With my girls, I force smiles. A cheerful voice. Jokes. I held her hand the entire walk down.

So I called my parents back and spoke with my Dad. It was hard. My Mom was harder and I lost it a bit. After the phone call I cried. Then I napped for fifteen minutes – because I called them back while lying in my bed. I felt better after the catnap. I found that I awaken from even a short sleep feeling good. The tightness gone. On this day, it returned quickly, but at least for a couple of minutes it was gone.

My sister called later that evening and that call was easier. A little inspiring, even. But overall, Saturday was a write-off. I couldn’t eat. I did get some work done. I watched Guardians of the Galaxy on Netflix with my family that evening.

Sunday was better. Great, even. I forced myself to have a normal day and to have hope. I forced down a ‘real’ breakfast. I focused on how stem cell transplants can cure this, and the odds of rejection were less than the odds of a cure for a person my age (43). I used Robin Roberts as an inspiration. My family and I went to the movies to see Guardians 2. Then a bit of shopping.

Focus was great and I got a lot of work done that night, and Monday morning as well. Alex called. He had been away all weekend with his phone off. He’s a good guy to talk to – cheerful and inspirational. At this point, I could handle phone calls. Yes, I’d lose my hard-fought state of calm, but at this point it was easier to recover.

By the end of the week, things were back to normal with no breakdowns. Perhaps it was the homeopathic treatments (magnesium, ferrum phosphoricum)…perhaps it was the soursop fruit and juice (look it up), or the psychosomatic results of the latter (likely) – I felt calm.

On Friday, May 26th, my wife took Avery to Brownies camp. This weekend I would have Mackenzie all to myself. This has never happened before – if I have the kids, I have both kids. So I made it my mission to give Mackenzie the best weekend of her lift and just suck her in. A movie, and treats, and board games (CandyLand and Connect 4). On Saturday she had her first soccer game and I was the coach. It was great to get my mind off things. Then we went to McDonald’s play land for lunch. Afterwards – we went to see Smurfs on Saturday, with Coke and popcorn which were her favorite. This weekend I had achieved what I set out to do – to give Mackenzie a memorable and loving weekend!

Tuesday, May 30th arrived and I had my first appointment with Dr. Karen Yee. She seemed nice. The nurse was great. The visit was quite positive, but they wanted more testing – blood, another bone marrow biopsy (!). We’d meet again in a week and then discuss treatment options. But I got the impression that perhaps this could be treated with chemo. They believe the MDS I have is this: Refractory anemia with excess blasts–2 (MDS-EB-2). So it’s possible that maybe, on it’s own, the progression is delayed for years. Very positive. And it’s important that I know that I have some more time to work on my Fantasy Hockey Guide, from which I make my living. It’s due out on August 1 and I wasn’t sure if I could get it done if treatments interfered. I now feel comfortable that I have at least several weeks to work on it, and I’ll be sure to get it done.

I’m handling everything with complete serenity now. There is no more panic of “I may only have a couple of years!” or “I won’t have time to make the money from my business this year that my family needs!” These concerns are allayed now, so focus turns to soaking up the time with the children, and making sure the business, Dobber Sports, is going strong.

It gave me the right mindset for the following weekend – because my wife was taking Mackenzie to Sparks’ camp for the weekend. So this would be my time alone with Avery. And as it was with Mackenzie, we had an amazing weekend of watching Harry Potter, going to see Wonder Woman, playing chess (she’s getting quite good for a Grade 3 student), picking out a meal of whatever in the world she wanted.

However, my appointment with Dr. Yee on Tuesday, June 6 would change everything and once again my world would be rattled.

 

 

 

 

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Comments
  1. lisakunk says:

    I typed in low neutraphils and low wbc and you came up. I’m reading as if I’m famished. On to the next post. I was diagnosed with Follicular Lymphoma in 2013 and have been in watch and wait since then. An upper endoscopy every six months and blood work every three. Now suddenly I’m having heart issues that required an ER trip for them to stop my heart and start it back and reset the rhythm. They advised an ablasion surgery but due to a low wbc and neutraphils, instead I’m about to have a bone marrow biopsy this Thursday to figure out the WBC numbers. I am scared half to death. It’s nuts I know but I’ve had many surgeries, seven pregnancies, four of which required major surgery and three with near death moments, but I am scared to death of a bone marrow biopsy. I know what pain is and survived it many times but wow. This is like a phobia. I’d appreciate any words of wisdom on that procedure. No putting to sleep possible with heart issues. I’m only 58 and have four kids (three are 21 year old triplets and the original model is 28) Believe me, they don’t stop needing you around when they become teens. I’m so glad you are wise and enjoying your kids one on one. Even in perfect health, those moments are priceless for adult and child. I’ll stop typing and go back to reading about you. Right now, I’m not allowed to be closed in with people. I’m missing my 40th class reunion tonight. Dang! immunities too low to risk.

  2. Dobber says:

    I’ve had six bone marrow biopsies and have another scheduled for two weeks from now. Worst one was the first one and best one was the last one. The difference? Strength and aggressiveness of the person doing it. The first one was done by a young slender woman who was a little timid and when I cried out she paused/hesitated. That makes it worse. The last one was done by an older experienced man who just rammed it in there got what he needed and was done – less than a minute for that one (fastest yet) and didn’t hurt much at all. They freeze you so the pain doesn’t start until it enters the bone. But the last doctor was so aggressive and quick I barely felt it.

  3. lisakunk says:

    All of that information is very helpful. I appreciate you getting back with me. Well here’s the thing. I showed up yesterday and was talking to the girl who was taking my blood and I said so if my white blood count in the neutrophils are coming up any chance that he would hold off and see what’s happening. And she said, “well you never know what might happen.” Soon after that the doctor came in and explained that he’s going to wait and see what happens because while my white count is still low my neutrophils were going up. I n the chair I was so relieved

  4. lisakunk says:

    I wish there was a way to edit my own comments especially when I hit send and messed things up. Anyway I was extremely relieved. I think I have a better understanding of how dogs feel in the pound when somebody comes and finally takes them out of their cage even if just for a walk. So I’m on temporary reprieve and he’s going to check my numbers again in two weeks in the meantime I’ll be seeing a rheumatologist because I have now had two positive lupus tests and one negative. Who knows what all that means. Again thanks for filling me in. Lisa

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