[DAY +19] "Difficult, but not impossible.".  That is how somebody who underwent HSCT to treat their MS described the HSCT treatment process.  I think it is a very accurate description.  When I think about the difficulties that MS has already saddled my family and I with, and the uncertainty of what the disease may do next, the decision to undergo this treatment was an easy one.  Made easier by the fact that my family was on board with it, and very supportive.  And now I am very glad that HSCT is in my rearview mirror, and what's left is for me to be disciplined, exercise, and eat.

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Today's blood test results were "good".  Will do another one on Tuesday, with the hope that the results are also good.

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*Update*
Exercise for today:
(1) 8 loops walked (4 in the a.m., 4 in the p.m.)
(2) 6x10 wall squats (3 in the a.m., 3 in the p.m.)

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We have moved into a 2 bedroom suite.  Here is the view (the water is just barely visible on the horizon):

[DAY +18]  All quiet here today.  It is Shabbat here, so there are very few people around.  And there is no need for me to go to the clinic and check in with Dr Nadir, so we decided to go outside and I would walk some.  It was very refreshing to be outside.  i walked 4 loops - 2 with an empty chair, and 2 with somebody in the chair.  The lucky person who got to ride in the chair?  None other than Dr Nadir, who we ran into outside.  Here's proof:

We chatted with Dr Nadir afterwards, and he reiterated the importance of me exercising with the goal of maintaining and even building muscle mass.  The transplant, he says, is guaranteed to make me weaker and reduce my muscle mass.  It is up to me to be disciplined and exercise.  Or I will suffer the consequences.

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*Update*
This afternoon's exercise:
(1) Walked another 4 loops outside.  This time it was Dad's turn to sit in the chair.  Somebody in the chair for me to push provides stability and requires more involvement from my leg muscles.  Both good things.
(2) 3x10 wall squats

[DAY +17]  Met with Dr Nadir today at the CTCI clinic. He reviewed all my discharge paperwork from Hadassah hospital.  I will do a blood test Sunday morning.  If all my blood counts remain stable for the next week, and I do not get sick, then my target departure from Tel Aviv is December 6.  A lot can change between now and then which may alter that date, but at least there is a target date to aim for.  He also advised me to move around as much as possible, and that I do not require a mask when outside.

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*Update*
(1) Walked 1 loop of 13th (short), and 2 loops of 4th floor
(2) Did 3x10 wall squats

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Here is a nice picture of Elaina & Aly.  Maybe their best together:

[DAY +16]  Doctor says I am free to go once my IV antibiotics are complete.  Nurse says that will be about 18:00.  Great.  Thank you Hadassah Hospital, I have been treated very well, and I feel a whole lot better now than when I got here.

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*Update*
(1)Walked 3 loops of the hospital wing this morning
(2) Now back in Tel Aviv

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Here is a picture of me today, typing this blog (that is my bed on my left - it is probably the worst thing about my stay here at the hospital):

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Happy Thanksgiving to all my American friends and family.  I hope it's a great one!

[DAY +15]  All blood counts remain on the rise, so if everything remains like this, discharge from the hospital tomorrow evening (after my IV antibiotics course is complete) is what I will get. My white blood cell counts are high enough that I will not be getting a Neupogen shot today.  I received 6 total.

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*Update*
(1) Walked 6 loops (3  in the a.m., 3 in the p.m.) of the hospital wing
(2) Neckline rash (most bothersome) 90% gone; waistline rash 50% gone

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When the nurses come in to draw blood, most comment "Nice veins, makes it really easy for us.".  My initial response was "Thank you, just like the veins of a heroin addict.".  One nurse quickly pointed out, "Drug addicts have terrible veins.  I once had to summon a surgeon to help me try and find a vein to draw blood from.".  Now, when the vein comment comes, I just say "Yes, happy to help.".

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There are several nice looking churches visible from the hospital.  Here is one of them:

[DAY +14] Blood counts continue to rise.  Doctor says this morning's test result showed my white blood cell count was 2.5.  Today's strategy is to give me another Neupogen shot (white blood cell production booster) and see what tomorrow's results show.  If all blood counts remain acceptable (continue to rise), and all else is good, then I will be discharged, and back to Tel Aviv (about 45 min drive) I will go.

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*Update*
(1) Doctor just came in. When I got sick initially (in Tel Aviv before they sent me here), I had a blood test done.  Those results have made there way here (via CTCI), and the reason for sickness was a bacterial infection in my blood.  Doctors here are not concerned, but want me to stay 2 more days to complete a different, more relevant, IV anti-biotic course.  Then, I will be discharged (Thursday).
(2) Neupogen shot received 12:30
(3) Walked 3 loops of the hospital wing.  Focused on lifting my feet every step.

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My platelets, although rising, are not out of the danger zone yet.  So, I do not want to shave, or even attempt to shorten my facial hair in any way - "Do not cut yourself", I have been told many times.  I have found a way to shave with my bare hands only.  Cave Men would be proud.  My facial hair, when encouraged (e.g. rub my hands gently on it), will fall out.  I have used this method to rid myself of some of my beard.

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Here is the view from my hospital room in Jerusalem:

Here is the view of the Hadassah Hospital Bone Marrow Transplant wing:

[DAY +13] A whole team of Doctors came to see me today (typical for Monday - I'm told).  And they came bearing the news I wanted to hear: all my blood 'counts' are on the rise  - all indications point to engraftment being underway.  Specifically, they told me that my white blood cell count is 0.6 (was 0, 0.1 previous couple days).  They said they need to see that number above 1.0 before I can be discharged.  If all goes well, that will be in the next day or two.  We will see.

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Pretty typical day here yesterday.  For anybody who ends up here in the future, the basic highlights of what happens each day are:

06:00 : Blood taken for testing by night Nurse
07:30 - 08:30 : Breakfast arrives, day Nurse says hello and asks a few questions, room is cleaned (extremely thoroughly)
11:00 - 12:00 : Doctor on rounds says hello, asks a few questions, and we talk about blood test results
12:00 : Lunch arrives
12:30 : Day nurse arrives with Neupogen shot
16:00 : Afternoon Nurse says hello and asks a few questions
17:00 : Dinner arrives
23:30 : Night Nurse says hello and asks a few questions if I am awake, otherwise they'll just go about their business.

Nurses come in and out the room several times a day to check your temperature, blood pressure, and pulse.  They also come in to re-up your IV fluids and/or antibiotics, and give you pills, as required.  You are also weighed daily.

The first 2 days here I received one platelet infusion each day.  I have not had one since.

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*Update*
(1) Neupogen shot received around midday
(2) Walked (2 loops) of the hospital (bone marrow transplant wing)

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The first few days after the transplant i didn't lose any weight.  I wasn't eating much, but i was being given lots of IV fluid which was being retained in my lower legs and feet.  I could barely put my socks (we cut them at the top to make it possible) and shoes on.  Tying shoelaces up was not possible.  I have started to eat again - I have a good appetite - and the swelling in my lower legs / feet is gone, even though the IV fluids are not.  My point here is that my daily weigh-in indicates I have lost around 15 pounds since before the transplant.  This is typical.  Can't wait to indulge in the recommended high-calorie post-transplant foods when I get home.  Haagen-Dazs Vanilla Swiss Almond, be ready!

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Here is another HSCT for MS success video.  The walker / patient, Brooke, says that every day post-HSCT is not roses, but the majority are.  And before the transplant, there were no roses at all, and every day was crap.  Congratulations Brooke.  Keep working hard.
https://www.youtube.com/watch?v=qDX9jq5D8_8

[DAY +12] Had a fever yesterday evening (peaked at 38.1C).  Provided blood and urine cultures, was given IV fluids and antibiotics, a few pills, and the fever has subsided this morning.  Don't know why the fever came, but that is not important to me.  My temperature is normal now, and I feel better, so that's good.

Last night, my hair was a nuisance.  It felt like straw was poking my head every time I moved my head on the pillow.  And when I woke this morning, it was everywhere.  That made me want to cut it off as soon as possible.  The day nurse (David - originally from Connecticut) offered to do it, and he did a fine job.  Thank you, David.

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*Update*
(1) Had my Neupogen shot today.
(2) Walked the hospital halls today (2 loops) before dinner.  Difficult, but necessary.

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Had a chat with the Doctor on duty at the hospital today.  The results from this morning's blood tests indicate that all my 'counts' are still very low, so engraftment has not started yet.  They will not discharge me from the hospital until my blood 'counts' are at a safe level, which will happen when engraftment does.  Engraftment could happen tomorrow, or it may happen in a week from tomorrow.  We will see.  In the meantime, I wait.  Patiently.

[DAY +11] For the record, Neupogen shots make me tired, weak, and provide me with a headache.   But I am pleased that I feel this way because of shots, and not because of MS or something else.  More IV fluids and antibiotics are on the menu for today, and probably another Neupogen shot.  We'll see how it all plays out.

As I was showering yesterday, I ran my hand through my hair to make sure all my hair got wet.  I looked at my hand after doing that, and my palm was hairy.  I let the water wash away the hair on my palm and did it again.  More hair.  I also donned a white t-shirt for the day yesterday.  Every trip to the bathroom I had to dust off all my facial hair from the shirt.  I think I can safely say that my hair is falling out now, a typical side effect of chemotherapy.  I will probably wait until I get back to Tel Aviv for a proper buzz cut using my hair clippers because: (1) in case I cut myself in the process I won't bleed to death due to low platelets (should be recovered by then),and (2) not sure if my hair clipper has enough battery life remaining to do the job.  Since today is Shabbat, all the stores are closed in the mall at the hospital complex, so the option of purchasing a voltage converter does not exist (we brought a few, but they are all in Tel Aviv).  In the meantime, I will just have to live with shedding hair everywhere (bed, shower, clothes, etc.).

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*Update*
Exercise:
Walked the halls at the hospital twice yesterday - before lunch and before dinner.

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I was chatting with Anne yesterday, boasting about how pleased I am to be eating things I thought were off limits.  The nurses here say "if the food comes from the hospital, eat whatever shows up.  We know there are patients here who are at risk due to food bacteria, and we take responsibility for feeding them.  Just don't eat anything from the mall or vendors.".  No problem.  Anyway, Anne asked a question about food and I gave a very abrupt response.  She laughed and replied, "Well you must be feeling better because you're still able to be an asshole.".  Yes, I am still able to be an asshole, thank goodness, but I am now an asshole in charge of my own destiny, not at the mercy of some disease.

{DAY +10] And we have made it to double digits.  Great stuff.  Last night received a couple doses of IV antibiotics, and one helping of platelets.  I will receive more IV antibiotics today, not sure about platelets, but I'll find out soon enough.  I already feel much improved when compared to this time yesterday.  

I have been assigned to an isolation room at the hospital.  The room has 2 sets of doors, is 'positive pressure' so nothing blows into it from outside, and has a HEPA filter on the air coming in from the A/C.

*Update*: I received another platelet transfusion, and another Neupogen shot today.

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I do not want to scare off any future HSCT patients from coming to CTCI for HSCT, so let me explain my situation - why exactly I am here in a hospital in Jerusalem. At CTCI in Tel Aviv they have done many HSCT / bone marrow transplants.  I have had nothing but positive experiences with the Doctors and Nurses there, and Prof Slavin is one of the pioneers of HSCT for autoimmune diseases.  Saying that he is an expert may be understating things some.  They know the risks of transplants, and make the patient aware of these risks.  If complications arise, there are certain things that the medical staff at CTCI know must be done for the patient.  If it is not possible to do this (or these) medical procedure(s) at CTCI, they will quickly send you to Hadassah hospital, where the medical procedures can be performed.  In my case, Dr Nadir believed I would benefit from a platelet infusion, something which cannot be done at CTCI.  I cannot say forsure, but I would guess (and it's very likely) Dr Nadir consulted with Prof Slavin before sending me to Jerusalem.  Before I left CTCI, I did have a brief chat with Prof Slavin.  So here I am, in isolation at Hadassah Hospital in Jerusalem.

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The night nurse who worked last night is originally from Calgary.  Small world.

[DAY +9]  Last night I was feeling very weak, had some chills, and by this morning I had a fever.  So, this morning Nurse Hussein came to my room and lifted me out of my bed and into the wheelchair, and up we went to the clinic (I was so weak that there was no chance I could do that on my own).  When I got there, I was transferred into a bed.  Then I vomited everywhere.  After that, and a change of pants and bedsheets, I kinda felt better, and my fever subsided.  I did a blood test, took some IV antibiotics and fluids.  Then my fever started to take off again.  Dr Nadir got my my morning blood test results (all counts still very low).  It was at that time that Dr Nadir decided it would be best for me to spend a few days at Hadasah University Hospital in Jerusalem.  So here I am.  Prof Slavin used to run the Bone Marrow Transplant Department here, so everybody here seems to know him.  Some of the nurses here are British, so that makes communication easier too.  It is likely I will be here for at least 4 days.  We will see.

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*Update*: Before I left CTCI, I received my first Neupogen shot.  This helps stimulate white blood cell growth, which will help protect me until engraftment happens and my bone marrow can do its thing.

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Right now is the best I've felt in 24 hours.  Maybe all I needed was a change of scenery.  I believe that they will not discharge me from the hospital until my blood counts are at normal levels again.  Then, the worst of the transplant's effects on my body will be over, and only hard work will remain.

A lady from the USA, Vicki Wilson, with the same diagnosis (PPMS) and very similar disability (EDSS 6.0) as me, had this transplant done just over a year ago.  She has often said that she works very hard physically, and that has lead to great results.  Here is her great story:
https://www.youtube.com/watch?v=6FcMm8C_nZ8

[DAY +8]  This morning's urine test revealed a little bit of blood; combine that with my waistline rash growing and the result is Dr Nadir ordered some IV fluids and steroids for me.  Tomorrow at 08:30, I will provide blood for a test to see what my 'levels' are at.  My other rash, neckline and above, is improving.  Ashraf gave me something to 'clean' my growing waistline (and both thighs) rash when I am in the shower.  That rash is growing, but it is not bothersome, so that's good.  And when my new immune system comes to town. the rash is expected to leave town quickly.

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Exercise today:
2 loops around 4th floor
2 x 10 wall squats

Notes:
1. Very tired yesterday afternoon/night/today.  Think it's a combination of low blood 'levels', being not in good overall physical shape, and pushing myself yesterday.  So, I intentionally did less exercise today.

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I hear the weather at home is cold and very winter-like.  And our friends in Buffalo got pummelled with over 5 feet of snow.  No thank you. It is 25C/77F here, and not a cloud to be seen.  Typical desert weather this time of year, I'm told.  Here's a photo snapped today from the clinic:

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We watch a lot of CNN here since its newscast is in English.  It is called 'CNN International', and there is a lot of coverage of Africa.  One thing I have learned is that the President of Nigeria is named Goodluck Jonathan.  I kid you not.  CNN tells me that there are a lot of problems is Nigeria, but I believe that with Goodluck Johnathan in charge, there are brighter days ahead.  Good luck, Goodluck Jonathan.

[DAY +7]  This morning at the clinic Dr Nadir looked me over.  He was concerned about my waistline rash, so he ordered intravenous steroids followed by fluids for me.  Whatever it takes.

Ashraf says my blood test results indicate that I am near, or at, the bottom, aka 'the nadir' (huge irony, since my treating physician is Dr Nadir).  Ashraf's quote to me, "Your immune system is zero.".  My response, "Thanks for pushing me to the nadir.".  He laughed.  Now, we wait for engraftment.  Timing of engraftment is different for everyone (totally body-specific), so it is even not worth a guess of when it will take place.  We will wait and see what happens.

Was talking to Anne about 'the bottom', and the engraftment / climb up that follows.  She said, "You mean like Drake says?".  Yes, just like Drake says.  This one is courtesy of Anne:
https://www.youtube.com/watch?v=RubBzkZzpUA

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Last night's sleep was the best since Day 0.  My trips to the bathroom numbered probably 5, (maybe because I got zero IV fluids yesterday?) and the result was longer periods of sound sleep.  Good news.

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Exercise today:
4 loops of the hotel floor
3 x 10 wall squats

Notes:
Make sure I lift my feet (right foot especially) when I walk, otherwise it is likely I will fall

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A nice Christmas photo of Elaina, Aly, and their pal Dahlia.  In case you weren't sure, Aly marches to the beat of her own proverbial drum, and will pose/smile when she feels it's necessary.  Or maybe she just prefers that candy cane over holding up a sign.  Whatever the case, good on her, I say.

[DAY +6] Met Ashraf this morning at the clinic.  He removed pic line from my right arm that had been used the last few days to provide me with fluids intravenously.  Ashraf says the rashes will clear up when my immune system recovers enough to take care of them.  Until then, we will keep them at bay with pills and cream.  He said to keep an eye on how I am feeling, and monitor my body temperature.  Any fever that reaches 38C is very dangerous for me in my immune compromised state, so call him if my body temperature starts to rise.  Dr Nadir has a cold, and I am feeling ok, so there is no need for me to see him and subject myself to the germs he may have.  See you tomorrow.

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Now, we walk.  Did 3 laps around the hotel floor this morning and included some arm and shoulder exercises.

*Update*- Did 2 x 10 reps of wall squats today

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We were treated to a rainbow this morning:

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Elaina and Aly took some Christmas photos yesterday:

[DAY +5] Feeling better today than I have felt since I arrived here. I have energy (been a while since I had some of that), I want to eat, a generally feel more awake.  This is good, but I know that these good days must be balanced with the bad days ahead.  Because there will be both, and taking advantage of good days is just as important as fighting through bad ones.  Ashraf says that my blood test results from Friday's test indicate that my 'blood counts' are decreasing, but have not yet reached the bottom.  Likely later this week I will be there.  When my blood test results indicate I have bottomed out, I will be given a 'stimulation' shot.  Exactly what is being stimulated and why, I am not sure, but I think the intention of the shot is to aid engraftment.

Another good thing to come from the blood test results is that my "lymphocyte" cell count is zero and has been for a few successive tests (my understanding is that pre-chemo Campath conditioning targets and destroys these cells, then chemo is given to kill any leftovers).  I'm not a Haematologist, but I think lymphocytes are the immune system cells that get screwed up and start to attack my central nervous system, aka MS.  Ashraf says that I need lymphocytes to survive, so we will be looking for them, along with all the other blood cell counts, to increase in population following bone marrow engraftment.  The new lymphocytes are expected to be better behaved than the old ones.

---------------------------

The biggest drag on me the last 16 hours or so is a rash.  It is around my waistline, around my neckline, and travels up the back of my neck to my head and behind my ears.  It wants so badly to be itched, but I know if I do that it ain't gonna help.  Ashraf believes it is a combination of my immune system being suppressed, the drugs in my body, and the laundry detergent that was used to wash my clothes.  His advice: wash clothes in hot water only - no detergent, some IV fluids (my favourite), and don't worry - it will go away.  Dr Nadir took a look this morning and said I'm the lucky owner of two different rashes.  He has given me anti-biotic pills and anti-biotic cream for the neck/head rash.  The other rash will go away on it's own as long as I follow Ashraf's advice.

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Walked the 4th floor (our floor) of the hotel 3 consecutive times today.

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Ashraf's parting words today were, "Your immune system is very low, very weak.  Be careful.".  I will.

[DAY +4]  Last night I won all the battles and made it to the bathroom whenever the urge to go woke me up.  Only negative is that the urge came about 10 times over the course of the night.  The result was not a great sleep, but great sleeps will come.  If there is an overload at the Tel Aviv water treatment facilities, I'm pretty sure I know the cause.

Today, my Dad designed a walking program that had me walk the floor of the hotel using the wheelchair as a walker.  A difficult task, but a great idea, and we did it. This program will definitely be repeated.  I also walked the wheelchair to the main exit, walked outside a bit (another beautiful day here), and then was wheeled around outside some.  I even got to sit outside for a short time.  The feeling of the sun and wind on my face was fantastic.

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Future HSCT patients: bring a shoehorn.  Your feet will likely swell from all the liquids you ingest intravenously.  Mine did.

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This HSCT journey is a solo journey - I am the one undergoing the treatment.  But, other than that there is nothing solo about it.  My local caregivers (Dad & Diana) have been with me every step of the way providing physical & emotional support.  They feed me, pick me up when I fall, held the catheter bag when I showered (Dad got that enviable task), make sure I follow all the rules set out by Dr Nadir, make sure I get off my ass and move around, and generally are just there.  And all of our friends and family who send notes & texts (to both Anne and I), read this blog, attended/helped with fundraisers, and who we know are ready to help with anything at the drop of a hat.  And my wife and children, when I see them on FaceTime, or even just see their photographs, happiness consumes my body.  So, my impression is that this HSCT journey is a journey of hundreds.  And it will be completed together.

[DAY +3] The night without the catheter meant multiple trips to the bathroom and back, with the goal of remaining upright (wall-walking) and getting there before my urge to go defeated my ability to hold.  I lost a couple battles, but I ended up winning the war.  Losing those battles had the effect of strengthening my resolve, which resulted in me taking many steps this morning up and down the hallway of my room.  I am pleased with that.

Today is the first day of the weekend here (Shabbat starts this evening at sundown), so most people are off.  I met Nurses Ashraf and Hussein up at the clinic to provide blood and urine samples for testing.  There is still blood in my urine (although less than yesterday), so another day of fluids intravenously is in order, says Dr Nadir.

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Many people have sent me texts.  I do receive them, so thank you.  However, in order to avoid large data and roaming charges, Rogers advised me to turn off all cellular data on my phone, and only use the local wi-fi.  As a result, sending texts is very inconsistent.  I get a lot of "Message Failed to Send" notifications.  I attempt to respond to every one of the texts I receive, but I am at the mercy of a technology of which my understanding is weak, so many attempts have failed.  The only device I can consistently send texts to without issue is my daughter Elaina's iPad.  I have no idea why that is the case.   It's nice to hear from people, so please keep the texts coming, just understand that a reply cannot be guaranteed.

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Today I am fantasizing about eating Dida's sour cabbage with smoked bacon & ribs.  If you are lucky enough to taste this masterpiece of a meal, you will wonder where it as been all your life.  Having this meal is definitely an option during Christmas at The Botica's (my in-laws), but unfortunately for me I will not be able to make it there this year.  I apologize in advance if I aggressively push you out of the way during Christmas 2015 in order to get me some kiseli.

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I like this one too:
https://www.youtube.com/watch?v=AEI85hYB_IE

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My condolences to our friends Marcie and Jay Donahoe.  Thinking of you guys.

[DAY +2]  Had some blood in my urine yesterday (apparently not unusual post-chemo), so last night I stayed in the clinic.  This was a precautionary measure, and I was accompanied by several bags of fluids and the night nurse Hussein.  Blood is still there today, but it is not getting worse, so when I am done intaking my second bag (currently underway), then I get to sleep in my hotel room (which I almost begged for), if I drinks lots of water and promise to contact Hussein at the first sign of discomfort. I promise.

Another event for today was the removal of my catheter.  Now my lazy ass has to get up and go to the bathroom under my own strength.  Moving around is definitely good for me to do, but I am really gonna miss bring able to pee in-situ without consequence.

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The last couple years of our (Anne and me) life together have been eventful, to say the least.  We've watched with joy, the growing of our girls from babies to toddlers.  It's hard for me to write just how joyous it has been, so you'll just have to believe me when I say it's very joyous.  We've also witnessed with both disbelief and anger (mostly mine) the deterioration of the abilities of a healthy male in his thirties due to MS.  That motherfucker worked quick.  Through it all, the joys, disbeliefs, and whatever other emotions were present, there has been one solid rock in my life - my wife Anne.  It must be difficult to watch your spouse go from partner to dependent.  But she did, soldiered on, raised two beautiful young girls, kept our mouths fed, kept our clothes clean, and kept our house tidy (and more...).  All, while no doubt ignoring her own needs to keep us healthy and happy.  We love her for it.  I love her for it.  I am thankful every day that I was the lucky one who got to marry Anne.   I hope our girls turn out to be just like her.  She is tough, funny, smart, loveable, beautiful, a straight-shooter, doesn't put up with nonsense, and many other great things.  Marko and Ika, you must be proud.

[DAY +1]  I am out of the clinic, had my pic line removed, have showered (with help from Dad & Diana).  Ashraf says no raw fruits or veg for 2 weeks.  That's too bad because right now I am dreaming of eating pomegranates and oranges outside in our backyard with family.  Aly puts her eyes over to my direction, tries and peer into my bowl, and in her babyish voice, asks "What you eating, Dada?".  I tell her, and ask her if she wants some.  She replies, in her unique way "No.  I got some.  See?".

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Last night in the clinic I slept the most soundly I have since I arrived in Tel Aviv.  Probably a few reasons why, but a major one is that the night nurse Sami provided me, after I asked him, with a sleeping pill.  Wow did that pill work great.  The previous nights in that clinic weren't so great in the sleep department, so I was not looking forward to another one.  Thank you Sami.

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I had a good chat with Dr Nadir today.  He said (I am paraphrasing here): "Over the next two weeks, as a result of this procedure your muscle mass will deteriorate.  Therefore, in a few days, when you are able, you must begin to eat protein, and move around some on your own two feet.  Otherwise, you will lose your muscle mass and be glued to a wheelchair.  It will be more difficult for you than for a normal length person, since you are long and lean, 'like a shoelace'. It is a matter of self-discipline, there is nothing I can do to help you."
Excellent information, and very concise.  I expect nothing less from Dr Nadir.

As Anne says, "You asked for this, now it's your turn to take charge.  Or else."

I agree, a big thing that HSCT provides people with MS is the ability to control their own destiny again.  So I will do what is necessary.  Whatever it takes.

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I feel like I have a new life.  I am able to see the realm of possibility again.  For that, I am very grateful.

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A few pictures from the recent days:

Day -2, with pic line inserted, about to undergo BMA, then chemo:

Day +1 (today), eating plain toast and tea

[DAY 0] Today is Day 0.  I have been waiting for this day, and am happy it is here.  Today I get my bone marrow/ stem cells back.  For those who want to know: I believe I read somewhere that the 'return' of a patient's bone marrow / stem cells is not absolutely necessary, it serves to speed up recovery.  The important part of HSCT to stop MS, is to kill some or all of the immune system using chemotherapy and conditioning (every HSCT facility uses a slightly different protocol).  That part is done, so today is the day I get stem cells back.

A big thank you goes out to Sue, the sister of Kate Paterson (also here for HSCT, 2 weeks ahead of me).  Sue is part of Kate's caregiving team.  Yesterday, Sue took one of my caregivers (Diana) with her to the local market,and told Diana all about cooking for / feeding an HSCT patient post-transplant.  What worked, what didn't, and what the Doctors and Nurses had to say. Diana said it was very enlightening,  and very informative.  Thank you, Sue.

At about midnight last night I vomited, and again this morning after trying to eat something.  Nothing crazy, very typical, and Ashraf said "Good".

One more night at the clinic, and then maybe tomorrow I'll be released to my hotel room if all is good.

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Here is a nice picture of Elaina and her Dida (Anne's dad).  I remember when he had his brain surgery about 3 years ago he said that his non-stop hiccups were a real pain in the ass.  My hiccups come and go, but when they are here, they are definitely a real pain in the ass.

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Happy Veterans Day to all veterans.  A special Happy Veterans Day to my grandmother Molly Sharpe, a veteran of WWII.  We love you (Great) Grandma.

[DAY -1]   BMA done, 2 rounds of chemo done, one more dose today, and tomorrow I get my bone marrow / stem cells back.  The best thing about the situation today is that yesterday during BMA, I had a catheter put in.  You are loaded up with fluids throughout these two days (mainly to protect your kidneys from the toxicity of the chemo), and not having to even think about getting to the bathroom before things get messy is great.  You want me to intake more fluids?  No problem.  Dunno how long I get to keep it, but I'm in no hurry to get rid of it.

Managed to take a shower this morning (with the help of dad & Diana).  Very refreshing.  For future HSCT patients here, I believe a good caregiver is an absolute must.  The patient needs help with basic needs (eating, bathing, traversing to and from your room).   The more caregivers, the better.

[DAY -2] Last night, many hours after receiving my last Campath shot, I thought to myself "I'm not feeling to bad".  Well, the Campath Gods must have heard me because I noticed a rash on both arms and both legs at about 8pm.  We contacted Nurse Ashraf and told him about it, he said it is expected so take a cold shower and drink lots of water.  Done and done. It's mostly gone now, but I can feel it bubbling just below the surface of my skin, ready to show itself should I scratch somewhere.  So I am resisting all urges to scratch. So far, so good.

Big day for me today.  I have completed the Campath conditioning, so it's time to remove my bone marrow / stem cells and then be hit with a good dose of chemo today and tomorrow, and then put stem cells back on Tuesday.  Anne always says "Strong mind, strong body".  I agree, so strong mind it is.  She also reminded me to put on the eye of the tiger, so I will put it on before game time this afternoon.

Once the stem cells are put back into my body, it takes 10-14 days for them to 'engraft'. During that time, many of your body's protection mechanisms are not what they need to be, so great care must be exercised.  Germs are something your body cannot deal with, as is bleeding (your body has lost the ability to stop it). So, I will be wearing a mask anytime I leave the room (likely only for blood testing at the clinic), and we all will be using alcohol-based hand sanitizer like mad.  Every handle, every doorknob, every time you touch anything, you get the idea.  I probably won't be shaving either, because knowing me I will cut myself.

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One of the first people to have HSCT for MS is from Australia.  Her great story, which I got from the HSCT Group on Facebook that I am a member of, is here:
https://www.youtube.com/watch?v=JU3oJEJT_yo

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I saw a post about pomegranate seeds on my wife's Facebook today.  Her mom (Baba) will peel 10 pomegranates (very time consuming) and Anne, Elaina, Aly and I will finish them off in a couple days.  They are absolutely delicious, and apparently very healthy too.  If I could only eat one thing the rest of my life, I think they may be the winner.  I cannot wait to have those delicious seeds again!
Some of Baba's recent handiwork:

[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: