[DAY -3] Today (Saturday) is the Shabbat (sabbath - ...and on the 7th day He rested).  The streets are empty, the stores are closed.  It is Jewish law, and I think it is a good one.  Everybody take a day to relax, feast, and enjoy each other's company.  The law is pretty all-encompasing - I don't think there is much that you are allowed to do except eat and talk to each other.  Starts Friday at sunset, ends Saturday at sunset (roughly).  The work week here is Sunday to Thursday, and as you would expect, the shops are very busy Friday.

I have been asked more than once what I want to get out of this HSCT procedure.  I would like to kill the disease, stop it dead.  This would give my body a chance to achieve some healing (a good analogy I read is how can you paint the walls of your house if your house is on fire? - HSCT intends to put out the fire).  As a result, it would be a lot easier for me to perform everyday activities like cooking for my family, walking to the park with Elaina & Aly, and just being more able bodied (and less tired) to help Anne around the house with whatever I can.  My moodiness may also improve as a result of HSCT, but let's not get crazy, I don't want to lose all my great qualities.

In a few years from now, it would be great to be able to do some of this too:
https://www.youtube.com/watch?v=TBXv37PFcAQ

But I know I gotta be patient.  I've read from many MS patient's post-HSCT accounts that the first year is very difficult and there will be many ups and down.  Symptom stability and improvement will only start to present themselves after 1 year.  And you gotta work for it.

I ate at the local McDonald's a couple times the first few days I was here.  The burgers are bigger, they have red onions (which I love) on them, and they just tasted better.  I forgot to take a picture, and I won't be going back because my immune system is deteriorating day by day, so you'll have to take my word for it.

Before I came, Anne bought me a MacBook Air computer to bring with me so I can write these posts, watch movies, surf the net, etc.  What a great computer.  Highly recommend.

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Update: Had my final Campath (30 mg/kg) injection today.  Nurse Ashraf was kind enough to provide in-room service for that one!

[DAY  -4] Third Campath shot is complete.  Final one is tomorrow, and then things will be not so enjoyable for about 2 weeks starting Sunday.  Last night wasn't so bad, symptoms were a massive headache and general weakness, pretty good compared to the night before. Spent most of the day in my bed, but I was able to make the beautiful weather outside part of my day:

For any future HSCTers, my Vital Hotel room is equipped with a shower only (no tub).  Since my legs aren't very strong, this makes getting into and out of much easier than movement in a shower/tub would be.  Highly recommend.

Everybody doing well otherwise.  Thanks a lot everybody for your well wishes and prayers.

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At home, Elaina is being a good big sister teaching Aly how to read:

[DAY -6, DAY-5] And we're off!  First (yesterday) and second (today) Campath shots are in the books.  I am told that side effects (flu-like symptoms, fever, shivering, bone pain) are most likely to occur in the first day to two.  After that your body becomes used to Campath, so things are better.

Last night I definitely had flu-like stuff (vomit), fever, shivering, and general overall weakness.  Wasn't a fun night, and I didn't expect it (which probably made it worse), but thankfully Diana was here.  If it was just my dad and I, it would have been a comedy of errors, and we probably would have gotten booted from the hotel for making too much noise, and a mess of the room.

I just returned from having my second Campath shot, and I'm told to expect similar experience to yesterday.  We will see.

I also asked what the m^2 is (mg/m^2 is the unit of dosage for Fludarabin).  Ashraf (nurse) says it is the calculated surface area of the body, based on height and weight.  I am tall, so it is large, if I were hefty too, the number would be larger.

It is an absolutely gorgeous, sunny day here (27C).

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If anyone is looking for an Anna/Elsa Frozen dress, Aly has a suggestion:

Looks like it's fun times at home:

Met with Prof Slavin, Samira, and got my schedule today.  The party starts tomorrow.

Prof Slavin was very knowledgable and professional.  I asked him a couple of things:
Q (me) - Will a higher dose of chemotherapy / immune system destruction be beneficial in defeating my disease?  If you think so, then I want this.  Please.
A (Slavin)- My medical opinion is no.  We give you what we believe will help you, and what we believe is a safe dose. Here's my analogy: The largest bomb ever dropped is the atomic bomb in Hiroshima.  It was designed to kill everybody and everything.  But did it?  No.  People were coincidentally in cellars or wherever, and as a result, a small amount of people escaped death.  This is entirely possible with the 'bad' cells in your immune system, whether we give you an increased dose (or even a lethal dose) of chemotherapy or not.  A few of the 'bad' cells may escape death, or all the 'bad' cells may die.  It is impossible for us to know by medical testing shortly after HSCT.  (I will find out in the years to come, that's for sure.)
[That's his medical opinion, and Prof Slavin certainly knows more about this than I do, so I am happy to accept what they provide (for battling MS, I believe that any amount of chemo is better than none).]
Q - Can you explain this procedure (HSCT) to me?
A - Think of MS as an adult lion in the jungle.  If you meet this lion, he will not recognize you as friendly, and will most certainly harm you and may even eat you.  However, if you care for and feed a lion cub from birth, he will recognize you as friendly, and likely not want to harm you.  This is how we think of HSCT for Auto-Immune diseases.  Our goal with this procedure is to kill the cells in your immune system that are harming you, and replace them with new cells that can learn not to harm you - that will live in harmony with your body.  You cannot teach an old dog new tricks.  But you can teach puppies.  (Got a good laugh at that one.)

Prof Slavin also talked about mesenchymal stromal cells (MSCs), and their potential curative affect on damage to the central nervous system.  He was very positive regarding MSCs - even talked about how they are the likeliest candidate for anti-aging regimens (after being prompted by my father's question, which Prof Slavin really liked). MSCs are something that I will consider. Just not now. HSCT first, let's see how I respond, and then go from there.

Prof Slavin also asked that I provide updates to him on a regular basis, for the benefit of him, me, and others that are considering HSCT for their PPMS.  I agree, so I agreed, and I intend on doing this.

His final words to me were "I hope we can help you".  Me too, Prof Slavin.  Me too.

Here is my HSCT schedule, discussed in detail with Samira:
Day -6 (Nov 5) : 5mg Campath
Day -5 : 10mg Campath
Day -4 : 15mg Campath
Day -3 : 30mg Campath
Day -2 : 15:00 Bone Marrow Aspiration (collection), 16:00 Fludarabin 40mg/m^2, 18:00 Cytoxan 60mg/kg
Day -1 : 12:00 Cytoxan 60mg/kg
Day 0 (Nov 11): 10:00 Bone Marrow Transplant (I get back what they collected)
Day +1 to +14 -ish : Reduction in population of various cells
Day +15 -ish onward : Engraftment, as seen by an increase in population of various cells via blood testing
Once population of these various cells are at an acceptable level, I am free to go home.  Cautiously.

I will also be taking various medications (pills) during the schedule.  This is intended to help keep various viruses and bacteria down while my immune system is unable to keep them down.

Samira said that I will be in the clinic round-the-clock during Days -2, -1, and 0.

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It was another beautiful day in Tel Aviv, as shown below:

But in the evening it rained, so we ate room service (two thumbs up).  Weather here changes quickly. Here is a pic from last night's dinner out:

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For 5+ years MS has attacked my body with no resistance.  Tomorrow, resistance shows up in the form of biochemicals, and it will show up every day on each of the 5 days after that.  Thank you, resistance.  Please kick as much MS ass as you like.  The more, the better.

As expected, not much happening in my HSCT world today.  So I am just eating, walking, being wheeled, resting, and have nothing to report.  But, in other news...

I hear it is cold back home.  Here is some evidence:

Weather here is very comfortable.  Picture was taken this morning at a cafe just outside of our hotel/mall/clinic complex (don't know who that gentleman is):

Walked/wheeled around Tel Aviv a bit today, had a nice lunch at Meatos, and watched the movie "Chinatown", starring Jack Nicholson.  That guy (as Aly would say) is one good actor.

Met with Dr Nadir (Prof. Slavin is away) and Samira (head nurse) today.  Did some blood tests since some of my pre-trip test results are from September - they want more recent data.  Dr. Nadir was very forthright and succinct, two qualities which I like very much (and lucky for me, two qualities that my wife possesses).  His message was basically this:
(1) that I will start feeling shitty after the procedure starts (when they are trying to kill the bad guys in my immune system), they will let me go home when it is safe to do so, and the goal here is to slow or stop disease progression but there are no guarantees.
(2) any healing, if it occurs, is totally dependent on me - my body's ability to heal, and my ability to provide my body with the goods to promote healing (exercise, nourishment, rest, attitude, etc.).
(3) there is no way to predict how I will feel in a year or two - could be better, could be worse, or could be the same.

None of this was news to me.

So essentially, this procedure is a gamble.  But, I like gambling, and if I do nothing, a steady downward trend of my abilities is pretty damned likely.  So this is a gamble that I am grateful to have the opportunity to take.

Samira told me to try and enjoy myself the next couple days, because I will not want to, or be able to, do much when the party starts later in the week.  They will review all my test results and establish a schedule in the next day or so.

Today, I also got to meet Kate Paterson and her family members that are here (Aaron, Sue & Noods).  Kate is currently undergoing HSCT for her MS here (I think she in on Day +4).  I've heard that New Zealander's are very nice people, and my brief meeting with them confirmed that one.

Got a call from my family back home today.  Great to hear all their voices.  A nice picture of Elaina & Aly taken this past September (just before they went with their Mom & Baba to Teta Natalie's baby shower) is below:

Here is the view from my hotel room:

Flying to Tel Aviv tomorrow to start HSCT treatment on November 2nd.  I am thankful that my father and stepmother have volunteered to go with me and help out.  I am also very grateful for the ridiculous amount of support I have received to help me get to this point.  Thank you all.

There were two fundraisers (that I had zero to do with) put on in my hometown of Windsor, ON.  A lot of people put a lot of work into making these happen, and a lot of people took time out of their own lives to attend and/or contribute.  Thank you.  Also, my wife Anne's parents are Croatian.  The support that the Croatian community has given to my family and I has been unbelievable.  Thank you.  And, in the last few days, many people stopped by, called, emailed, texted, etc., to say goodbye and good luck.  Thank you.

Tough day for me having to leave home.  Reality hit me pretty hard.  But, I think Anne said it best  when she said "this is your shot at having a better life, so you gotta go do it".  Yes, it is, and yes, I do.  That filled me with a different emotion, and I am ready to get on with it.

One of the purposes of this blog is for me to track my progress. Here is a video of me walking earlier today at my dad's house:

Happy Halloween everybody, from my favourite Toopy (Elaina) and Binoo (Aly).