Archive for the ‘The Battle Against MDS’ Category

On Thursday, July 13, my parents brought me to Princess Margaret Hospital for what I figure will be close to 30 days – though I would try to cut it to 23.

Wednesday, the day prior, I spent with my wife and kids. But first I had to go to a mandatory education session about transplants. Having already met with the transplant doctor, I had no further questions and didn’t learn anything at the session. Good for the hospital to educate the patients, and I’m sure most people need both the session and the doctor meeting. But I would have been fine with just the doctor meeting only. Instead, my wife and I had to waste the entire morning getting into Toronto, parking, sitting through the session, and coming home for 1pm. We took the kids to Neb’s World in Oshawa, followed by the movies (Despicable Me 3). We had planned to also have lunch with them, walk them and the dog down some trails, etc. But that was in the morning and we had to go to the session instead. The prior night (Tuesday), I slept in the tent with the girls and the dog. A fitting final day.

But on Thursday, after checking into PMH and getting my room all set up and a few tests done, the  doc told me I could go home and come back first thing Friday. A bonus night! It was nice to surprise the girls when I walked through the front door.

Friday was hectic. I had to get pics taken of my heart. Then I had to get a Hickman line. It was two hours in that waiting room before I went in to get the line, which took about 15 minutes to  put in. As gross as the process is to hear described, it wasn’t painful at all. The freezing was probably the worst. Then a weird pulling sensation as they snaked the tube into my body up near the collarbone and then curving right towards the left half of the chest.

Friday night was my first night in-hospital, but it wasn’t lonely. The day was too hectic. Saturday they started chemo – three different kinds. The rough one was an orange color that had to be injected slowly via syringe. Sunday was more of the same and that was when I started to feel nausea. At this point, it slowed my appetite, but didn’t defeat it. By nightfall, however, I was really only interested in eating apple slices.

Monday, the vomiting began. In the morning, and again in the evening. I gave up even trying apple slices at dinner. Monday was also the final day of that “rough” chemo. I’d still get the other two, but this one was done after Monday.

Tuesday I did not vomit, but neither did I eat more than three or four apple slices the entire day. I started feeling a little better that night, and had a banana. The next morning I had a donut and by lunchtime I started getting cocky. I had a Big Mac combo brought to me by my parents. I ate most of the burger and a couple of fries – and held it down. Riding this wave of confidence, I decided to have an egg salad sandwich for dinner. That didn’t work out well –  the vomiting returned.

Meanwhile, my daily blood counts were going wild. My WBC shot right up over 5.0 for the first time that I’ve seen in years. But by Thursday it was down to 0.1. On Wednesday my hemoglobin was at 75, which was their cutoff for getting a blood transfusion. They decided to give it one more day – and hemoglobin actually went up to 77, thus buying myself another day. A blood transfusion seems to be in my future for Friday.

Also Thursday – in the afternoon I was set free of my IV pole. That thing had been attached to my hickman line since Friday. It made going to the bathroom a pain in the ass, since it required stretching far to reach the plug and pull it from the wall, and then wrapping the cord out of the way, and slowly weaving it out from between my bed and the privacy curtain. And because the IV was giving me a steady flow of saline, I had to go to the bathroom often – every three hours if I drank nothing, every two hours if I drank water along with it. So yes, I had to get up and pee at 10pm, 12am, 3am, 6am – each time doing the merry dance called “untangle the cord and the IV pole”.

But now I’m free of it. And what’s more – the doc said I may be able to go home Saturday evening for 36 hours.

It’s my understanding that the next two weeks will see my blood counts hit bottom. I’ll be highly susceptible to illness but otherwise feel somewhat normal. Hair loss is expected around Day 14 and today (Thursday) is considered Day 6. I’m feeling positive about this first month. Like the worst is over and all that’s left is hair loss and slow improvement of the nausea. I can see lots of these day passes ahead, plus I feel that I’ll get out of here in 23 days instead of 30.

The big one is in early September. The transplant is where things not only get risky, but they get rougher. This here in July is just a practice run.

 

 

 

 

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Feeling Despair

Posted: July 7, 2017 in The Battle Against MDS

Today, I feel despair. Hope took a beating. And finding the motivation to pick myself up off the mat is difficult to say the least.

Let me get you up to speed.

They found two perfect unrelated donor stem cell matches for me. On Tuesday I went in and spoke with the leukemia doctor and then had a bone marrow biopsy. I was told that, unless my blast count was below 10% on that biopsy (would require a miracle), I would need to check in the following Monday for heavier chemo and stay in hospital for four weeks. The stem cell transplant would be early September.

At this point it’s my thinking that the transplant, from what I read, had a 67% survival rate if it’s a perfect related match (i.e. from a sibling). And that because the data is three years old, and that I’m only 43 while most people with MDS are past 70, then I figured my odds were closer to 80%. So that’s my thinking.

On Wednesday I went to White Cedar cannabis clinic. There I spoke with a doctor at length, explaining that I was looking to increase my odds of survival so I wanted to try the Rick Simpson CBD oil. Maybe it will help push my blast counts lower. I’ll try anything even for an extra .0001% chance. So I got the prescription, the medicinal marijuana card and an order for CBD oil.

After that, my wife and I went to PMH to meet the transplant doctor. He was friendly, confident and hopeful. He was a little quiet, and his English wasn’t the best, but we could mostly understand him. One thing I did miss though, or misinterpret, was when he mentioned 45%. I thought it was my odds of dying within a year if I did nothing.

Today I was told that instead of checking in on Monday, I will check in on Thursday or possible Friday. So I had another three days to work on my Fantasy Guide before going into the hospital. After that conversation (it was on the phone, with the leukemia doc), I read the note online. That note was written by my transplant doctor (Dr. Thyagu) and I have access to my file online. The note says that he informed my wife and I that after the transplant, historically someone within my age group and with my numbers has a three-year survival rate of 45%.

That rocked me to the core. Those odds are shitty. Why on earth would they think I should do this with such shitty odds? It sucked the wind out of me. And I don’t know how to get the strength back.

Dr. Thyagu said that I have to take this in stages. Get through the first 10 days. Then get through 30. Then 60. With each stage I make it past, the survival rate increases. If I look at it that way, I can do this. The problem is – I can’t get myself to look at it that way.

Finished Round 1

Posted: June 24, 2017 in The Battle Against MDS

I finished Round 1 of chemo last Saturday. After four sets of shots in my stomach, they did a set in my leg on the Friday. The nurse looked at my arm, but didn’t see enough fat there (woo hoo!). But the leg was a mistake – the bruising still hurts there eight days later. On Saturday, the other nurse found another spot on my belly for the three shots.

The days since chemo have been exhausting, but surprisingly felt okay otherwise. I have been taking Vitamin E and C, Bee Propolis, magnesium, Ferrum phosphoricum, Sulfur iodatum (the latter three courtesy of a homeopathic doctor), and I’ve been drinking soursop juice. I also signed up with White Cedar, a clinic specializing in cannabis oil (the famed Rick Simpson treatment). I figure if each thing raises my odds of survival by .01% then it’s worth doing. As long as it doesn’t interfere with conventional treatment.

I found on Monday, Tuesday and Wednesday that I got hit with a wave of exhaustion at around 3pm or 4pm. I needed to lie down, but couldn’t because I’m home with the kids – and the kids are home from school at 3pm. And I had to make dinner early because they had soccer, baseball, etc. But on Thursday I really paid for it.

Furthermore, on Thursday I received a couple of disturbing bits of news. First of all, I got an email from a former writer of mine who has a son going through similar blood issues. His son could not get a match in the World Bank and had to settle for a Haplo match transplant from his mother. It didn’t take. So he had it again from his father. A half-year later and they’re still fighting. This was a blow to my confidence. People could possibly not find a match? I had been so sure that in this day and age, everyone could eventually find a match! The second blow that day was when I weighed myself. I hadn’t been exercising and I had been eating like crap. Really just eating whatever I was in the mood for, not worrying about healthy food just worrying about eating period. But instead of expecting a weight gain of one pound to maybe 224…I was at 215. I had been exercising daily for two years, fighting to get below the 219 mark but failing. No matter how hard I worked out I couldn’t get below that. Now here I am four pounds below that! This is a weight I hadn’t seen since I was 28.

At around 1pm I got hit with that wave of exhaustion and it was bad. I felt dizzy. I didn’t trust myself to walk to get water, as I felt faint. I called my wife who rushed home. I got the kids at 3pm off the bus, and then went to bed until 5:30. I also drank a chocolate meal replacement drink.

Friday I went to PMH for a blood count check. Not only were they okay, but some of the numbers went up a little. My platelets went from 65 to 67. My neutraphyls went up a lot. From 0.20 two weeks ago to 0.27 last week to 0.58! So was the the Vitamin E? Vitamin C? Bee pollen? Sour sop? Whatever it is, I’ll keep taking them.

They were also concerned about how my Thursday went. So they did a check on my blood sugar, they did an ECG, and just made absolutely certain that everything was okay. My heart was great (“like an athlete” they said!). So we figure it was just anxiety – from the weight loss and the news of the son of my former writer. Plus I wrote two articles that day (on the Vegas Golden Knights) and I hadn’t written an article in nearly two months.

 

Speaking of news, I got bad news given to me with good news at the same time to soften the blow. My sisters were both just half-matches for stem cell donor. But they told me the coordinator at life labs said that they found a match in the World Bank. I’m the sort of person who needs to hear it from official channels before taking it as “official”, but this lifted my spirits. I spoke with the life labs guy in person. I gave him a call. He assured me that not only did they find a match, but they found two. And that there was a third match they were verifying, too. So I had backups. They would need to confirm their willingness to donate, as well as pass a medical. But it sounds like I have donors! When it’s official, I’ll announce to my friends on Facebook as well as my readers.

 

Chemo

Posted: June 14, 2017 in The Battle Against MDS

Chemo began this week. So far it’s been fine – three needles filled with azacitidine to the belly Monday. Three more on Tuesday just below the first three. Each needle takes less than 30 seconds. Once I arrived at PMH and check in, they pull the azacitidine out of the freezer and prepare it. It takes about an hour to prepare, so we wait in the waiting room for about 90 minutes before getting called. Then I go in and get the three needles. Each time I’m there, the nurse is very friendly and answers questions patiently. She grabs a nurse practitioner or a pharmacist to answer my other questions. Between Friday’s blood check appointment and the Monday and Tuesday appointments, I bet I spent a good 90 minutes just having questions patiently answered.

We’re two days in and I’ve only felt nauseous after a big meal. Instead, I feel headache-y in the morning, and all of my joints and neck are stiff. On the second day I was exhausted and actually went to bed at 9pm, thinking I’d get up at midnight to do some work because at that moment I couldn’t think straight and needed a nap. Instead, I slept through to 8am. I take the two anti-nausea pills in the morning. I’ve refrained from taking the other anti-nausea pills after the treatment. And so far that’s been okay.  There has been some pinkness around where the needles go, but it looks like this lasts about three days (the ones from the first day are already fading). I’ve been told that these could get itchy, but that hasn’t happened yet.

If chemo gets no worse than this, I can definitely handle it. I don’t expect that to be the case. It’s the morning of Day 3.

 

Friends and family have been supportive. That’s an understatement. One intriguing treatment option that’s been sent to me is Rick Simpson’s cannabis. And I have friends/family who could set me up with this. I’m considering it. Ridiculous that this helpful plant is somehow actually illegal in Canada (until it becomes legal next year). Another friend spent hours and hours researching everything she could online and through books that she bought. Then she bought me supplements that could help: Vitamin C, Vitamin E, Ginger, Bee Propolis, Curcumin, Chlorella, Resveratrol. I checked with the pharmacist who spoke with me after my treatment and was told that the first three are fine. The Bee Propolis they want to research more first. The other three ‘could’ act as a further hindrance to the platelet counts or the neutraphils. And after researching them again I’ve decided not to take the Chlorella nor the Resveratrol.

And of course I’m still drinking the sour sop juice.

 

If there’s a 1% chance of something helping 1% – then I’ll take that edge.

 

For information on how to register to donate stem cells (it’s very easy on the donor – very easy – and you save a life), visit here: https://blood.ca/en/stem-cell/onematch-information-new-registrants

 

On Tuesday June 6 my wife and I were sat down by the doctor and it was explained to us that my blast count was at 15% and that I was designated “high risk”. I would most certainly need a stem cell transplant and that chemo would need to start almost immediately. They scheduled it for June 12.

We had questions and she answered them all patiently. Then she left the room for a few minutes so we could gather our thoughts and put together more questions (a very nice touch). Then she returned and answered the new questions. We learned about the importance of having a perfect bone marrow match, and that the best likelihood of a perfect match was from a sibling, of which I have two. The likelihood is 25% each sister. After that, we look to the world bone marrow registry.

(Please register today – right here)

The ride home was intense. I was filled with anxiety and I could tell that my wife was too. She’s usually very strong and can be stoic, but she was genuinely rattled now. When we reached home she took the kids out of the room and I tearfully informed my mom and dad.

The anxiety was tremendous. Probably as much as it was on May 19th when I was first diagnosed. But I knew that the path to health relied on positivity and staying relaxed. I knew I had to get myself to that point as soon as possible. I knew it would happen, but all I could feel at that moment was despair.

I had to go public now. My readers of DobberHockey were getting a little restless. Where has Dobber been? Why is there no “Ultimate Fantasy Pack” in my store? My writers were getting restless too – “I can’t get this to work”; The emails for the little things in life, usually handled quite easily, were just building. On Wednesday June 7 I released:

And then I braced myself. I knew there would be lots of well-wishes, and some of it would make me emotional. A lot of friends and family had no idea it was coming, so that could get rough.

What I didn’t expect was the outpouring of love from many who were complete strangers: the hockey community. Look at the replies beneath my website statement and beneath the Facebook statement! Wow…

And here you can see all the replies on Twitter.

I loved them all, especially the ones that speak of their own experience with MDS and how a family member recent beat it. And not to pick a favorite, but this one made me laugh out loud while at the same time inspired me:

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And this one from Twitter is the most inspiring:

 

As I already noted, the reaction of the hockey community was tremendous. Hundreds of tweets, replies, private messages all wishing me well. I was overwhelmed. And as nice as all of this was, it actually made for a pretty tough day. I’d just get my outlook onto the positive side of the ledger when I’d get a tough, emotional tweet or comment or email or even a phone call that would set me back again. But I understand that a lot of people were impacted by the news and that they truly care.

It was also touching when some well-known names chimed in with well wishes:

Capture

 

This was a day that extended my anxiety a little, but it was worth it. Best to get this done in one day, rather than stretch it out over months. And it actually made Thursday easier. And by Friday I felt pretty positive and confident. I would beat this.

 

 

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.