Day 18 - What is MS?

Happy Halloween Everyone!

We decorated the house today and are in costume as we speak (we are bikers! - yes, not very original, we know). Chris is still taking allergy medication for the hives that are still down both of his arms. He has also developed bruising down one arm, which we think is due to his low platelet level. We are planning on giving the hospital a call tomorrow just to make sure we have nothing to worry about.

Chris is currently at his "Nadir", which means the low point in time between chemotheraphy cycles in which you experience low blood counts. From this point onward his blood counts should be going up.

Recently we have been recieving a bunch of questions from people following our blog that they aren't 100 per cent sure what MS is and how giving Chris a new immune system will help. To be honest, Chris and I both had no idea what multiple sclerosis was when he was first diagnosed. And until things started getting more serious I didn't even really understand the science behind it.
So here is a quick rundown of how it works. Please keep in mind this is just my understanding from reading and talking to doctors so there may be some errors!

What is MS?

Multiple sclerosis (MS) is a disease which progressively injures the nerves of the brain and spinal cord. People without MS have nerve cells that are covered by an intact protective layer known as the myelin sheath. Nerve cells are made up of neurons that have a head called the nucleus and a long strand that is called the axon, which is covered in the myelin sheath. This covering helps to speed electrical signals in the brain. In people with MS, for an unexplained reason, the T-cells (which make up your white blood cells) recognizes the myelin in the brain and spine as a threat to the body and attacks it. This is known as demyelinization. When the myelin sheath thins and breaks down, the, electrical signals can't travel between the neurons.

Although the myelin can rebuild itself, the rate of demyelinization caused by MS is too rapid for it to keep up. The damaged parts of myelin are often called “lesions” or “plaques”.

Basically, you just need to think of a lamp: You have a lightbulb that recieves it signal from a copper wire. The wire is wrapped with plastic to protect it. If you start losing parts of the plastic the wire will start to rust and eventually the light won't be able to turn on.

This demyelinization can cause a wide range of symptoms such as:
- muscle stiffness or spasms
- cognitive problems (e.g., memory loss)
- dizziness and sensations of spinning
- mental health problems (e.g., depression)
- extreme tiredness
- difficulty walking
- headache
- paralysis
- bladder problems
- bowel problems
- hearing loss
- itching
- numbness and tingling
- pain
- seizures
- speech and swallowing problems
- shaking
- vision problems

MS has its most striking effect on motor and sensory neurons, which generally have long axons carrying information between the brain, spinal cord, and the rest of the body. Because these axons are longer, they have a greater need for the insulation myelin provides and are therefore most affected by its destruction.


What causes MS?
Nobody knows for sure what causes MS, but most scientists agree that it involves a combination of environmental and genetic factors. Different factors that are linked to MS include:

- Cold Climates/ Lack of Vitamin D: MS occurs most commonly in those living in northern climates. Apparently, where you spend the first 15 years of your life plays a role in your odds of developing MS. Canadians have one of the highest rates of multiple sclerosis in the world. (see map)

- Infection: Researchers believe that many autoimmune diseases are provoked by some kind of infection that may affect people differently who have a certain genetic makeup. The infection can trick your body's immune system into attacking your own tissues, even after the infection has gone.

- Family history: While scientisits have determined that there is no MS gene, research has shown that you are more likely to get MS if someone in your family has it.

 So there is my little (or not so little) explanation of MS. Hope it makes sense!

Day 17

Good news! First we did not spend the night at the hosptial last night. It turns out Chris was just having some sort of allergic reaction. Second, Chris is now two weeks post chemo and still has a full head of hair and his tastebuds. He seems to be handling this chemo pretty well, which is maybe a good sign for the second half of his treatmet (for anyone in the medical profession who is reading this, please don't make fun of  us too much for being so naive).

We are gearing up for a big Halloween tomorrow. It is our first time that we are actually staying in and I am a little excited to be able to hand out candy to kids in the neighbourhood. We decided it would be best if Chris just watched from the top of the stairs. I don't care if I am being overly cautious. Children are full of germs. You just can't trust them.

We know we have been sending you lots of links to videos and articles, but we thought we would send you one more (and we promise to try and limit them in the future). Today we have a link to Chris' doctor, Dr. Harry Atkins. He is the hematologist and member of the bone marrow transplant team. Since we are at a learning hospital, we have actually only seen him a few times. We are often with other doctors, pharmacisits, nurse coordinators, research fellows, and sometimes people we aren't even sure work for the hospital.

It can sometimes be confusing because you can ask the same question to all of them and get a different answer from each person. And we often find ourselves recounting Chris' medical history over and over, and sometimes it takes a lot of strength to not tell them to just read Chris' chart because all of the information is in there. But we really do like all of he doctors that are at the hospital, especially Dr. Atkins.

The first time we met Dr. Atkins it was to determine if Chris was a candidate, and we spent over two hours with him. He went over every detail of Chris' condition and even marked down our wedding date in his file. When Chris had the bone pain last weekend, it was Dr. Atkins that was on-call and he was very concerned when we called him that night and made sure Chris was seen right away. He even called us the next morning when he went into the hospital to make sure Chris was doing better and that the emergency doctor had prescribed Chris enough pain medication. The most telltale sign is everytime we mention his name to anyone on staff at the hospital they all comment about how great he is and how much he cares about his patients.

So after my long love letter about Chris' doctor, here is a link to him being interviewed about this procedure.
http://www.insidermedicine.com/archives/Insidermedicine_in_the_Spotlight_-_Dr_Harry_Atkins_1436.aspx

Day 16 - The Start of Another Weekend (Oh no!)

It is now after hospital hours on a Friday, so of course Chris has just informed me that he is having a strange reaction. Chris appears to only have strange reactions after our main contact on the bone marrow transplant team goes home for the weekend. Now these strange reactions usually end up with us spending the night in the hospital, but I have high hopes we may be able to deal with this one.

Chris has broken out in a rash on both of his arms around where his IV was inserted. It was barely noticeable yesterday, but today it has become more red and travelled down his arm. Chris literally told me this at 6:00 pm. Sometimes I really want to hurt this guy.

So after a quick call to Nurse Laurie (my mom) she guessed it was just an allergic reaction (possibly to the antiseptic used to clean his arm) and let us know what to look out for. We also read that Cyclophosphamide can sometimes cause skin irritations, but we think it might be a little too delayed for it to be that. So we will be making a trip to Shoppers Drug Mart tonight, but it will be for Benadryl and not narcotics. This is a welcome improvement from last weekend.

Other than this latest development, Chris has been doing great. We both have been spending a lot of time reading other patients' blogs and actually watching a few videos on YouTube. In the United States we found a similar procedure being conducted in a clinical trial, called Halt MS. From what I can tell,  the main difference is the chemotheraphy they use to knock out the immune system. In this trial they use  a chemotherapy regimen called BEAM, which consists of four different drugs (carmustine, etoposide, cytarabine, and melphalan). A couple of the patients that went through this kept blogs or posted videos at the end of their treatment. Now both of these patients were a lot worse off than Chris, but there stories and improvement are pretty incredible!

This is a blog from one of the patients that did Halt MS. It is very similar to what Chris and I are doing. The patient, Jamie is now one year out from the procedure.
http://mymsjournal.blogspot.com/2010/09/its-been-1-year-today.html

This YouTube video is from the founder of a website called ActiveMsers (http://www.activemsers.org/). The video is pretty funny and really honest, and I definetly recommend watching it when you have a minute (or 15) free.
http://www.youtube.com/watch?v=6VTu--htcMI

Finally, we recieved another package in the mail today. We could get used to this :) Chris recieved a book that was autographed by the author (Jess Walter) and a message that said he was rooting for him. Honestly, all the support that we have been getting is great (and greatly appreciated). Speaking of which, we had two hits on our blog from the Phillipines today and now have over 1300 hits.

Day 15

We are starting to get in preparation mode for Chris' second phase. Today, I went and got my first flu shot. I had been waiting until after Chris' stem cell collection as you are not allowed to go into that section of the hospital if you are showing ANY signs of a cold or flu. Since I was told that some of the side effects of the flu shots can be similar to flu-like symptoms (aches, fever, etc.) I was waiting to get through this first part. Now I can feel a lot more assured that I won't bring the flu home to Chris.

I also went out and bought a new winter jacket and a hat to cover Chris' soon-to-be bald head. We are really hoping for a milder winter (especially since snow shovelling duties will be on my shoulders this year), but thought we would go and buy warm things while we now have the time. Unrelated to this whole procedure, we also spent the day carving our new member of the family, Henry, the Jack-O'-Latern.

We also came across information about another patient, Alex Normandin, who went through this whole procedure in December 2008. He was a medical student at McGill University and when he had the treatment he was at a similar stage in his MS progression as Chris. At the time he was still able to work, but doctors were telling him that he was no longer responding to his medication and would likely end up in a wheelchair.

Here is an article about Alex: http://www.canada.com/health/Stem+cell+transplant+reason+optimism+patient/1541919/story.html
Also, here is a YouTube video of Alex explaining the procedure. He is only 5 month post-transplant, so it is interesting just to see him.
http://www.youtube.com/watch?v=sQMmyD8fbqc

Finally, we just wanted to send a big thank you for the care package that was delivered at our house today. It was so delicious.  (merci beaucoup!)

Day 14

We are getting spoiled. First, we returned yesterday from our walk to have a care package filled with brownies, gingerbread (with the most delicious pumpkin spiced buttercream!) and cookies sitting on our doorstep. Today, our door bell was rang (repeatedly!) and by the time I got to the door there was no person or car in sight. However, there was a card and gift filled with Halloween treats (decorations, costumes, candy and more). Later on today we also had a bouquet of fruit, including chocolate covered apples and strawberries delivered to our door.

Treats and surprises are the best way to keep us going. Thanks everyone :)

Since the weather was still so nice again today, and we were in the Halloween spirit after our delivery, we drove out to Manotick today and picked a pumpkin. We figured that it would be empty at 2:00 on a Wednesday and we were right! There was maybe one other car there and we had tons of pumpkins to pick from. It took us a little longer than we thought, because Chris didn't understand that I needed a pumpkin to speak to me. Finally, we found our pumpkin and we will be carving him tomorrow. Any suggestions or requests for what kind of jack-o'-latern we should make?  We also bought some sparkling apple cider for our New Year's Eve party. Since Chris won't be able to drink alcohol, we thought we would buy something to celebrate the new year with, and hopefully at that point we will have a lot to celebrate.

Chris is still feeling pretty sleepy and gets tired when we go on walks, but other than that he is still doing really well.  We almost want the second phase to start right now, so we can just get it over with!

Oh and we now have over 1000 hits! That's incredible. Thank you so much for following us :)

Lucky Day 13

We have decided that we find the number 13 lucky. On Chris' 13th day of treatment, we got the call that his stem collection went really, really well and he didn't need to go in today! We posted some more pictures from yesterday's collection . Chris fell asleep for awhile, so I got bored and took a bunch of pictures of the machine. Sorry for those of you who don't like looking at blood!

It turns out all of that pain was actually a really good thing. Although, I am not sure Chris is ready to admit it. But it does mean we are finished the first half of this treatment. Now, Chris just needs to get into shape for the second part, which we are looking at doing at the end of November (pending on scheduling issues). 

In the meantime we are dealing with all the other fun things associated with taking a medical leave. The main one: short term disability forms. We had the pleasure of recieving a nice letter from SunLife Financial yesterday night telling us that Chris had missed the 30 day deadline and would be denied coverage. Seeing as it had been less than two weeks since Chris went on disability, we were more than a little confused.

It turns out that Chris' work indicated on their forms that Chris' last day of work was September 17. This was true, but that was because Chris was off getting married and away on his honeymoon. The insurance company took it to mean that Chris was off on disability at this time.

We have now spent all day talking to countless customer service representatives trying to explain to them that Chris was just not at work, he wasn't on disability. At one point I heard Chris yell into the phone, "I was on vacation in Greece and I am pretty sure I wasn't disabled at that time!". We got transferred after that.

So even after all of those calls, we are still waiting for the Abilities Case Manager to call us back. In the meantime, Chris' work has faxed over a letter explaining that they were paying Chris while he was on vacation, and that his last day of work was not the same as his last day before his procedure.

To cool Chris off a little, we went out for a walk today. Chris' doctors have indicated that it is really good for Chris to get exercise in this period, so he can be nice and strong for the second part. Since the weather seems to be be cooperating with us (it was 19 here in Ottawa today!) we went for a walk along the Ottawa River. We can't go very far, because Chris gets tired fairly quickly. It was REALLY nice to get out of the house though.

Oh and on a completely unrelated topic, we just wanted to say a very BIG thank you to everyone reading our blog. When we came back from what was a fairly frustrating day, we checked to see our blog statistics (we can see how many people read our blog each day and from what country they are from). We already had 145 visits today, and even a few from Cuba! It is really a great feeling to have so many people following  this blog.

Day 12 - Stem Cell Collection

What we learned today is that no matter how well you plan for something, you may get a call at 9:30 in the morning that will throw your plans away.

Since the person that was scheduled to get their stem cell collection today did not have a high enough stem cell count they called Chris this morning to see if he could come in and be tested to see if he was ready.

They figured that since Chris was in so much pain over the weekend that it was a good sign that his body was producing a lot of stem cells.

So about an hour later Chris and I were sitting in the hospital while they took his blood for the 50th time in the last two weeks (a bit of an exaggeration). The blood then gets sent to Canadian Blood Services to analyze all of his counts. Two hours later, we got the good news. Not only was Chris ready for the stem cell collection, but his stem cell count was so high (hence the extreme pain over the weekend) that they only needed half the blood, and it would only take 3.5 hours instead of 7 or 8.

The stem cell collection went really well. We had two nurses from Canadian Blood Services that spoiled Chris. He wanted juice, they asked him what kind. His neck was stiff, and they rushed to give him pillows. We were really lucky to have them. They were even willing to work in the dark for awhile, so that Chris could turn off the lights and sleep for a little.

For the stem cell collection to work, Chris is hooked up up to both of his arms, and one of them needs to stay completely still. The blood goes out of his arm into the machine, which you can see in our photos. The machine then seperates the stem cells and keeps them in the bag above (they kind of look like cream of tomato soup). The rest of the blood then goes back into Chris' other arm. All of Chris' blood actually goes though the machine twice, so it was actually pretty neat to watch.

Other than being a little stiff, Chris did really well. His only mishap was when he accidently wet the bed...by squeezing and breaking one of the gloves they had filled with warm water to increase circulation to the insertion sites.

Now we are waitng to find out if Chris will need to go in and do it again tomorrow. Even though Chris had a great stem cell count, when it is processed at the lab they can lose anywhere from 30 to 60 per cent.

We are expecting a call within the next hour, but cross your fingers for us that we don't have to. Stem cell collection normally begins at 7:30 am, so that would be an early morning to get there in time.