Archive for the ‘The Battle Against MDS’ Category

One Year Ago…

Posted: May 18, 2018 in The Battle Against MDS

A year ago, on May 19, I received a phone call at around 4:40 that would change my life. It was Friday of the long weekend and Dr. Crump from Princess Margaret called. He had been monitoring my blood for two years because early on they thought I had lymphoma, but when that was ruled out they just monitored until something changed. I remember Avery answered, and it had to be the first or second time she ever answered the phone. When she handed it to me and I heard Dr. Crump’s voice, that feeling of dread and fear welled up right away. Why would one of the most esteemed lymphoma specialists in the world call me personally? Let’s just say that I knew it wasn’t to wish me a happy long weekend.

I hurried into my office to get away from the kids and that was when he dropped the bombshell. They had diagnosed me with Myelodysplasia. My wife happened to text me from the GO train at the same time, wondering why she couldn’t get through when she was calling. I’m Googling this new term and texting her back while trying to keep it together for my conversation with Crump. Reading it on Wiki as fast as I can so I can get questions for Crump, who was giving me plenty of time to ask them, was a bit of a scramble. But I was told that it was serious and I was looking at immediate chemo treatment and almost certainly a stem cell transplant for my bone marrow.

There was a lot of panic and crying in private that night, I was only able to speak to my wife about it while trying to remain normal for my kids. Saturday found me still devastated. Was I going to live two years? What would I do with that time? The last few months would likely be horrible. Would treatment delay things for 10 years? Five? Would I see my daughters grow into adulthood? At this point…if I was offered a way to lock in 10 years of life in exchange for giving up the risk of one year or 20 years or just plain “not knowing”, I would have taken that deal in two seconds. Just to see Avery get through high school and Mackenzie get close and know that they were on the right life path was my only goal. That remained my thinking for the next couple of months. I started thinking about writing letters to my kids, to be given to them each birthday as they grew up after I was gone. I started running through plans to further organize my websites to transition to a full-time manager or a new owner, to make sure my family was taken care of. These are things you think about!

On Sunday I had regained full control of my emotions, though that really just meant I was a robot. We took the kids to Guardians of the Galaxy 2 and that actually got me to laugh and broke me out of my haze.

Two or three weeks later, I shared the news with my friends and my readers and was overwhelmed with support. I would often go back and read the powerful words people wrote over the next few months. A week after that, my wife and I sat down with the kids and explained what was happening.

The summer was a whirlwind. Within two months I found out that my sisters were half-matches but that the registry had found two full matches in the world bank. Also, my cancer had moved quickly into full-blown leukemia and I would need to be admitted to hospital right away. That’s where I spent the better part of two months. I got the stem cell transplant on August 30. Today, more than eight months later, I am completely healthy. All of my blood counts are great and other than a blip in November things have only been moving positively with nothing to suddenly alarm us. All I need to do now is avoid crowds and sick people, and stay out of the sun as best I can until one year (my first re-birthday on August 30). I have been very lucky and I know, personally, that others have not. I appreciate my time with my kids a whole lot more and I am trying hard to be a more positive person. It has been a year to remember, or maybe one to forget?

Needless to say – I would turn down that 10-years-of-life offer if it were given today!

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Monday was Day +180 post transplant

Things are going well for me in terms of health. I can do regular workouts and I can string together a couple of six-hour sleep nights in a row and I’m fine. Pretty much back to normal there. I can have a few beers, too, and within a week or two I’ll be filling the hot tub back up and I’ll be back in business!

Thursday I went in for some tests. One of which was a test that measure the percentage of my blood that has the donor’s cells. The target is to keep this above 95%. Back in November I was hit with the Epstein-Barr virus. It was a terrible month for me and I had a lot of trouble recovering. I went in for weekly Rituximab injections to battle this and it worked. Anyway, the EBV knocked my donor’s cells down to 85% and the doctor was concerned. But after Rituximab I tested at 89% at the end of December and 92% at the end of January. So the hope is that the results of the Thursday test will show >95%. If that’s the case, then I really have zero complaints about my progress. It’s as good as can possibly be. I’ll hear back in a week or two.

I’m still not venturing into crowds or parties. Still haven’t seen Star Wars. Looking forward to reaching one year on August 29 in perfect health. Hoping to actually go camping in August? Maybe go on vacation down south next winter? So close to normalcy!

I’m not able to learn the identity of my donor, nor him mine. But I sent an anonymous note of thanks and will learn (if he chooses) who it is after one year.

Thank you for your warm thoughts and well wishes that kept me going last summer! Don’t forget to join the stem cell donation registry if you haven’t already. You’re seeing first hand what it can do.

Day +138

Posted: January 15, 2018 in The Battle Against MDS

 

High time I did an update.

My 90-day Chimerism test showed yet another drop, but a small one to 85.3%. This was still a great concern but Dr. Thyagu guessed that it was due to the swollen lymph node which was caused by a virus (Epstein-Barr). A biopsy backed this. So I was put on Rituximab (spelling?). That was an IV every Friday for four weeks. However, test showed it to be gone after two doses…and confirmed gone after three doses. The swollen lymph node in my neck had shrunk. Problem solved.

I do feel better now. Not quite normal, but getting there. I can handle six hours of sleep, but not on consecutive nights. Used to be I could do 5.5 hours for three straight nights before it started to hit me. I’ll get back there! I felt well enough to work on the Midseason Guide for my website, which put those short sleep hours to the test. I succeeded. And now I’m trying to ease myself back into regular work.

My weight overshot where I wanted it. I wanted to limit it to 210 because it will be so hard to get back there. But here I am at 214 (D’oh!). I was lazy with my workouts over the holidays, down to every three days and even then only doing half. And with the Guide I didn’t have time to bring that back up. Now that the Guide is out, I tried today to do a full workout, but had to stop it at 30 minutes. I’ll get there though.

The 120-day Chimerism showed a small rise to 88.9%, which is what we hoping for. We hoped that it had dropped as a result of the EB virus and once that was gone it would go back up. So far so good. Next week I get tested again.

My blood counts are all in the normal range, except one – Lymphocites, which fight viruses. But that’s down due to the Rituximab which apparently took out the Lymphocites for several months. But still – all the other blood counts were normal, which I think is a first for me in the last five years.

 

I’ll continue to keep you posted, thanks for following.

 

The Good…

I got the results back from my bone marrow biopsy. Blast count was at or below 1%, which is excellent (and expected). I don’t have cancer right now.

 

The Bad…

I developed a fever and over this past week you can add a sore throat to that too. The former is concerning because my body is clearly unable to fight it on its own. We’ve later determined that it’s related to the swollen lymph node in my neck. The latter is concerning because it hurts like hell, peaking at Day +78. It impacts not only my desire to do things (like get off the sofa), but also my outlook on life and this battle.

As of Day +80, the fever is gone and sore throat is mostly gone. Likely due to the increase in anti-viral meds and the addition of new anti-biotics. On Tuesday, Day +76, I went to emergency at Toronto General Hospital. I was already there for a CT scan (looking at the lymph node and all lymph nodes in my abdomen) so I just to emerg from there. The ear/neck/throat people looked at the lymph node and told me they wanted another biopsy on it and do a full work-up. From what they’ve seen, it’s a cyst in my neck under my jaw with several lymph nodes attached to it. I suspect I’ll finally get some action on it next week and that it will be gone in 15-20 days. Maybe I can start Day +100 with the same positivity that I had in the first 50 days (but have since lost).

 

The Ugly…

My Day +30 Chimerism test showed that 97.9% of my cells are from my donor and that’s great. The goal is to have that above 95.0% so mission accomplished. However, my Day +60 Chimerism test saw this number drop to 87.3%. My cells are elbowing out the donor’s. Dr. Santosh doesn’t see it that way, though he’s admittedly concerned. But that’s how I see it. What he wants to see is the Day +90 test results before he’ll consider it a trend. He suggests that it’s possible that it goes back up a little. One of things that he would do in response would be to get some lymphcites from the donor, presumably so the donor’s white blood cells can get in there and fight. At any rate, Santosh believes that there are plenty of things that can be done if a trend is indeed spotted. But I can’t say that the news from this Day +60 test wasn’t a blow to me. Added to the fact that I received the news while feeling like shit, and I wasn’t in a good way.

As I write this today on Day +80 I feel better physically and – no surprise – my outlook has improved too. That’s why they call it a “cancer fight” I guess, instead of a “cancer walk in the park”.

 

 

The Journey to Day +100

Posted: November 7, 2017 in The Battle Against MDS

Today is Day +69

Between my last update (Day +30) to today, my progress has been moving forward in leaps and bounces. To wit:

  • I gradually eased my workouts up to 40 minutes on the treadmill and eased the speed up slightly and incline up slightly. As well, I increased the length of time I held 10-pound dumbbells while on the treadmill to over 15 minutes. Also did 42 situps before starting. Key is to start low and add a minute and one situp each day.
  • Eating is normal
  • Weight gain up to 207, so five pounds since release
  • Released from the blood transfusion unit weekly visits, and would start at the regular transplant clinic.
  • Discussed removing my Hickman line
  • Breathing finally felt normal. Deep breaths had felt slightly burning…almost like a heartburn.
  • Chimerism results came back and it says that 97.9% of my blood cells are from the donor. The target was to get above 95%.
  • Hair alert! Getting localized growth on my chin and moustache. A shame I can’t grow a full beard yet, but maybe I can pretend it’s 2002 and just grow a goatee

 

Of concern:

  • Still have some redness around the Hickman line
  • Super light pigmentation under armpits and around groin

 

The Big Bump in the Road

No sooner had all this moved forward when…my lymph node swelled up quickly and painfully. On Day +60, the node under my jaw on the right side towards my ear started to swell. By Day +61 it had swelled up considerably. No other nodes did this. It was painful enough to disrupt my sleep.

Since I was going in on Day +62 for a bone marrow biopsy (hopefully my last?) anyway, we waited until then for the doctor to take a look. Doc put me on antibiotics and said I could take Advil to help with the pain. Antibiotics did nothing. The node has hardened. And now they have me on new antibiotics that are sent through my Hickman line and require me to walk around with a bag and pump. Looks like it’s viral though, and Dr. Santosh figured it could be similar to the virus that leads to mononucleosis.

Anyway, workouts have stopped. It’s been nine days since my last workout. I feel soft. I feel like recovery has been paused. And I don’t like that because I like to push forward. But all I can do is wait. The wait could be a few weeks.

On Thursday, Day +71, I ‘could’ get the results of my bone marrow biopsy from last week. It should say that I don’t have cancer. And as long as my blood counts remain normal going forward – I will never have a bone marrow biopsy again. Last week’s was my seventh, and I’d say it was the second easiest. Just grit your teeth and bare it, don’t give the doc a reason to hesitate – he/she needs to just get in there quickly and get it done.

 

Anyway. Will update when I have something to update.

Dobber

Discharged! (Part 2)

Posted: September 29, 2017 in The Battle Against MDS

On Day +17 the doctor lifted isolation. Of course, on Day +15 my wife was sick and we couldn’t risk her bringing the kids to the hospital to see me (outside of my wing, of course, since the kids aren’t allowed in that wing of the hospital). But she was better the next day, and we gave it another day to be sure it was completely gone and not contagious, she brought the kids to the hospital on Day +18, a Sunday. We had a great reunion! Amazing hugs. And a really fun time in the 14th floor lounge that we pretty much had to ourselves.

On Day +19 I was discharged from the hospital. It had to be some sort of record because I was informed by the 15th floor doctor that I could be in there for six weeks. And even when I checked in I was told 26-40 days. In all it was 24 days.

I was lucky (knock on wood). So far (knock on wood) I have been at the happy end of every window they gave me. I had an 80% chance of a fever a couple of days after the transplant (didn’t happen). The blood counts would start to rise between Day +14 and Day +21 (it was Day +14). I would get mouth sores (oral mucositis) between Day +7 and Day +10 and it would last until the counts started going up (I got it Day +10 thanks to frequent frequent mouth rinsing). Only once out of about 100 temperature measures did I reach the 37 degree mark, peaking briefly at 37.5. Otherwise it was always 36.xx degrees even to this day. I never lost my appetite (though with the mucositis I was unable to eat – I still wanted to). I never vomited. I was told I would lose my hair between Day +11 and Day +18. It started Day +18 and I never did lose my eyebrows.

 

So what’s ahead?

Right now I’m going to the hospital twice per week for blood checks. So far so good. They even reduced my magnesium to three pills per day and the cyclosporine to four per day. I asked again about my three-year survival rate, but an updated one based on my current date. Doc just said to take it milestone by milestone. Milestones are: Day +30, Day +60, Day +100, Day +180 and 1-year.

My three biggest risks, as I see it, are (in order):

  1. Infection. I was told about a guy last year who was fine until the six-month mark, then he caught an infection and was dead in a couple of weeks. I can fight most infections (more, as time goes by) with the help of the hospital. But not all of them. Right now my immunity is strong for bacteria, but still very week for viruses and fungi. My immunity is like an infant. So I need all my shots again (gradually). After a year, I’ll be mostly out of the woods for this risk. Though anything can happen.
  2. Cancer, the return. This one, if it happens, mostly likely happens 4-6 months after the transplant but is a risk all the way up three years and beyond. Though the longer it goes, the better the odds that it won’t return. Fighting it again – I could go through the same process, or I could do clinical trials. Depends on when it returns. The longer it takes to return, the more likely I would just do the same process (hey, if it bought me five years…then doing it again to buy me another five sounds good).
  3. Graft vs. Host disease. I need this, to some extent. I need some minor battle between my cells and my donor’s. But it can’t be too much. Too much would lead to side effects ranging from rashes to serious infection. Too little could lead to the cancer coming back. So I guess this kind of relates to 1 and 2 above.

I also have some rules that I need to follow/things that I must give up for now:

  1. Driving. Just until I’m done with the cyclosporine (about two months).
  2. Drinking. After I’m done going to the hospital twice per week and I’m down to once per week, I will allow myself a beer or two on a Saturday night. But for now I can’t mess with the blood counts (specifically liver).
  3. Raw food. Again, just for a couple of months. No dipping eggs. No medium-rare steak. Those are the two things I miss the most.

Well, that’s my update. It’s great to be home and see the kids and hang with the wife. It’s great to be back at work, too.

 

I checked back into the hospital on Thursday, August 24th but I was able to get back out and have dinner with my wife and kids. Chemo started on August 25th on what is called Day -5. However, the chemo was very tame and so I was able to have a day pass Friday. Ditto for Saturday.

Saturday I went to watch my daughter’s final baseball game and I barely made it in time. I should have been late – and stopped off to buy sunscreen. Oops. And then I raced from there to the soccer field where my other daughter played her last soccer game. Needless to say I got sunburnt. Not good (or smart) when you’re getting radiation in three days.

The chemo after that was too much to get a day pass (Sunday/Monday). On Tuesday I got radiation. Neither were big deals. I felt nauseous, but didn’t vomit.

Wednesday I got my donor’s stem cells:

stem cells

Kind of anti-climatic, right? Just a bag of lighter-colored blood. And it took about 45 minutes to give to me through the Hickman line.

After that it was several days of slowly dropping blood counts. I didn’t need my first blood transfusion until Day +5. My temperature remained below 37 degrees through today (Day +12).

On the night of Day +9 I had the worst pain felt in either hospital stay. Oral Mucositis.

https://en.wikipedia.org/wiki/Mucositis

It was centered around my throat/back of my mouth and not even a double dose of morphine and a numbing rinse could help it. Kept me up for four hours. I finally slept and when I awakened, the mucositis seemed to move away from the throat and throughout the mouth. This was actually better. The pain lessened a lot and could be mostly handled by morphine and the oral mucositis rinse.

Unless I ate.

I think I delayed getting this affliction by a day or two thanks to excellent oral care. I was rinsing every two hours with mouthwash (no alcohol) and brushing frequently. But everyone gets mucositis if they have this chemo (apparently) so I got it around midnight of Day +9 (so pretty much Day +10).

Once it moved to my mouth, the steady pain was manageable. But if I ate, the pain was beyond control. I quickly discovered that I can only handle bland food and ideally wouldn’t have to chew.

Here on Day +12 I’ve discovered a couple of good foods for this. The instant oatmeal, if made extra creamy/soft, can just be swallowed. And mashed potatoes with gravy – make this extra creamy as well. Both of these things are actually decent tasting, and what’s more they are filling. Unlike soup, which I can also manage but leaves me hungry again an hour later. Top all this off with ice cream.

One other thing I’ve been experiencing is a drop in magnesium. So I’ve been getting this through the IV every day since Day +5. This one sucks because an hour into it my face gets ridiculously hot. Word of advice – get this over at least three hours, not two. Today I’m trying four hours, to see if I can stop the ‘hot face’ from happening.

That’s it for this update. I hope my blood counts start rising in three days (Day +14), but likely five or six days. When that happens, the mouth issue goes away.

 

 

 

 

Discharged (Part 1)

Posted: August 23, 2017 in The Battle Against MDS

After 35 days in the hospital I was finally discharged. The bone marrow took that long to wake up, and in fact hadn’t really awakened at all. But the doctor determined that enough signs were there to indicate that a “wake up” was happening soon and he felt that I needed to be home for at least a few days before going back in for my stem cell transplant. So he cut me loose, despite my neutraphyls being just .08 and white blood cells at .04. My hemoglobins were at 78 and because I was being sent home he gave me a blood transfusion (normally we get these if hemoglobin gets below 75).

I love being at home. Sleep in my own bed, rest on my own couch, grab my own meals from my own kitchen (or get my wife to!). However, the stay at home was tainted. On Wednesday (I was released the Thursday) I received the best bone marrow biopsy I ever got. Followed by a lumbar puncture (LP) that also wasn’t bad. HOWEVER. The LP resulted in terrible pain in my neck that forced me to lie prone and flat in my bed for Wednesday. I was told that this would last 24 hours and that coffee and lots of liquid would help. Thursday, however, was the same thing. I could hardly hold my head up. I had no strength in my neck and there was enough pain to give me a headache. I got home at five o’clock and took two Robaxacal. That helped immensely. In fact, it cured me for Thursday night, I was almost 100%.

However, I awakened Friday with the pain back and the Robaxacel didn’t do anything to help. So I went to the chiropractor who has gotten me out of several jams in the past. And you know what? He helped. Again I was nearly 100% and my Friday was saved. HOWEVER. Saturday the pain was back again. I went straight to the chiropractor and this time what he did didn’t help at all. I went home and tried Robaxacel and Tylenol. No dice. Nothing worked. I had to lie prone for the day and drank lots of water.

Sunday it felt a little better, but holding my head up for more than 20 minutes was a chore. Monday it was better still. So I finally sat at my computer and did some work. I was able to work for 30 minutes, then lie down for 20 minutes, back and forth over and over. Not ideal, but I did what had to be done.

On Tuesday it was better still, and this time I could hold my head up for an hour. My wife and I went to the hospital for a scheduled blood check and sure enough all my counts went up a lot. I was again told to have coffee, it would help with the neck pain. So I had one, and it did help. Now today, Wednesday, my neck feels good. At the computer for two hours and still fine. Drinking coffee now. So I get to ‘really’ enjoy my family for one day. Tomorrow I check back in for what will be about 45 days.

It’s scary, I won’t lie to you. More chemo, plus radiation to boot. Then the stem cell transplant on the 30th. Then recovery and hope.

Two positives – One is that, although not necessary, my donor’s blood type is the same as mine. So that helps a bit, gives a bit of an advantage. Second, the last round of chemo got my blast count (the cancer) down below 5%. It needed to get below 10% for the transplant to proceed and the lower the better. So I feel good about this.

 

Infection

Posted: August 3, 2017 in The Battle Against MDS

Day 1 is considered the first day that I get chemo. So they don’t count the first two days I was here. Today is Day 20.

Chemo lasted five days, as I already outlined, with the first three being the really hardcore, powerful stuff. By Day 7 I started to feel better (that’s a relative term, to be clear). I could function and had a ‘bit’ of an appetite.  On Day 9 I went home to see my kids, wife and dog. I got a four hour pass. I was only able to lie on the couch, but at least I was home.

Each day I felt a little better and on Thursday, Day 13, I felt absolutely fabulous. I asked the doctor for a pass that would allow to go home – and spend the night there. At first Dr. Andre was hesitant, and rightfully so. I may be feeling okay, but in the background the chemo was now fully working its brutality. My counts were all low, but the key is the neutraphyls, which were at zero. Dr. Andre decided to allow it, but told me to wear a mask on the drive (air circulation in the car).

As I was driven home, I started to feel a headache coming on. By the time I got home I had to lie down, and the headache was hurting a lot. I was home by around five, and went to bed before nine. I didn’t get to really talk or hug my kids the way I wanted to. I woke up a lot throughout the night and felt the fever coming on. By six in the morning, we checked my temperature and it was at one hundred.

My wife rushed me to the hospital and I went straight to my bed. Then it was three days of hell. Antibiotics, antivirals, blood transfusions, sweats, chills, even another vomit session.

I came out of that one just a shattered, shell of human being. As if five guys had just kicked the shit out of me in a parking lot for an hour and then walked away, leaving me in a fetal position. Or a better description is I did a triathalon without any training and without stretching beforehand – how I would feel the next day. My muscles were toast.

My mind was back and my spirit was back, but physically I was spent. This was July 31, a Monday. Day 17.

It was also the day before I release my 12th annual Fantasy Hockey Guide. The infection had taken me out for three days. Three days in which I had planned to a bit of work on the guide here, a bit of work on the guide there. Now, instead of a light, casual schedule, I had several hours of work to do – and about two hours of energy to do it.

For the first time in history, I had to release the guide on August 1st without the teams being 100% completed. Vancouver, Vegas, Washington and Winnipeg each had a bit of work yet to be done on it.

On Tuesday, I took it off from work. It was a struggle to walk. My calf muscles were shot. They were chewed. They had no strength and couldn’t hold me standing for more than thirty seconds. This made going pee every couple of hours a lot of fun. They gave me muscle relaxants, which did help.

Wednesday was more of the same, except my appetite was 100% back. I actually ate most of a huge panzarotti. I didn’t plan to take it off work, but I did. Again.

So now we’re at Thursday. Day 20.

I’m told that on Day 21 my bone marrow wakes up and starts producing blood counts again and that over the weekend I can expect my counts to actually start rising on their own. But for today, at least, my counts are down. Hemoglobin is at 71, so I need blood. Platelets are at 9, so I need platelets. I’ll get those today. then tomorrow the counts will be fine…and then on Saturday, ideally, the counts will go – up. Wouldn’t that be nice?

My stem cell transplant coordinator was in to see me today. They are hoping to do the stem cell transplant on August 30, which means I would get readmitted to hospital on August 24 for pre-treatment. I will be discharged from my current stay here sometime between August 9 and August 14.

 

 

 

One thing I’ve learned about chemotherapy is that your situation can change in an awful hurry. And then change again. My last day of chemo was July 19, precisely two months after receiving my official diagnosis of Myelodysplastic Syndrome (MDS). On Thursday, July 20 I felt good enough to eat most of a Big Mac combo for lunch. And I held it down. I still felt full, almost bloated, at 6:30pm but wanted to eat a half of an egg salad sandwich. I took a few bites, then vomited.

Okay, so…no solid food. Gotcha. I had a popsicle. Then vomited. Okay, so no flavored food. Gotcha. I had some ice chips. Then vomited. Okay, so…nothing. Eat nothing.

I went to bed and had a great sleep. I felt better in the morning. At lunch I decided to have McDonalds breakfast burritos. I went with my sister-in-law up to the 16th floor patio and sat down and took a bite. Then everything was spinning and I fainted right there on the table. They wheeled me back to my room and gave me a blood transfusion.

See? Quick changes. I’m learning to better seize the times where I feel good, and not push when things aren’t quite right. I felt better by 2pm, a mere 90 minutes after passing out, and I ate those burritos. But by 9pm I still felt full and bloated. So rather than force dinner, I’ll skip it. I did try a bite (lasagna), but I listened to my body and shut it down quickly.

Some other quick notes:

  • Elliotte Friedman phoned me yesterday to tell me to stay strong and that the hockey community was behind me. “Don’t be a hero” he said, not wanting me to push myself. I found the phone call very touching, and he certainly didn’t need to do that. But Elliotte has always been one of (if not the) nicer guys in hockey.
  • My wife came to see me at 11am and brought me those burritos. I was sleeping at the time so she left for a couple of hours and missed “the show”. But from 1pm to 9:30pm she didn’t leave my side again. She has been a warrior.
  • My sister-in-law works nearby and she has been here morning, noon and evening – three times per day every week day. Such tremendous support both emotionally and helping out with the food and water situation.